Post Thirty Three. This Is How We Become The #MillionsMissing – A New Project For 2019.

I have decided to undertake a project this year. I wanted to see just how isolated I have become since having ME, so, for the whole of 2019 I will be keeping a record of the time I spend in the company or vicinity of other people.

Why?

As well as satisfying my own curiosity, my aim with this project is to help others understand the extent of the isolation I live in. I want to help people understand just how severely ME limits my ability to interact, communicate with and be around people. I’ve explained before that ME is defined by a pathological inability to produce energy on demand at a cellular level. Unlike the common misconception, ME is not an illness that causes me to feel tired, it’s an illness that limits my energy production. I think most of the people I know can understand how this affects my ability to undertake various physical and cognitive activities, but I’m not sure they know just how severely it affects my ability to simply be around people. I have gone into this before, especially with my last post, Post Thirty Two. Some Things I’d Like My Visitors To Be Mindful Of., in which I explained how carefully I have to plan and manage the time that I spend around people. I think this post and this project as a whole tie in well with Post Thirty Two, but with this project, I’ll actually be able to show them just how drastically my reality has changed due to having ME.

What this project is not about.

Importantly, I want to be sure that people understand that the isolation I live in is not a choice I have made, it’s not because I lack ‘motivation’, nor is it caused by neglect. This project is not a reflection on any of the people in my life, it is not about lost or fading friendships or a lack of offers. I have lost friends, it’s true, but that is irrelevant to this project. I’m not lacking people, I don’t need to join a befriending scheme, what I am lacking is energy, I am simply too unwell to be around people.

This project is not about loneliness. I wouldn’t have the faintest idea how I could calculate the amount of time I feel lonely. It’s too subjective. How would I accurately log a feeling, especially one that comes and goes in waves? Of course I do feel lonely at times, sometimes excruciatingly so, but this project is about isolation, not loneliness. The results of this project will say nothing about how often I did or did not feel lonely in 2019. It is not a project about my emotions, I have no interest in doing that.

It’s not a scientific experiment, it’s a personal project. My counsellor likened it to more of an evolving art installation, which I like the sound of.

How is this going to work?

To figure out how my current level of isolation compares with the time I spent in the company of people before I had ME, I came to a figure that I think represents an average month for me, pre-ME. I based this on the couple of years immediately before I became unwell, from 2012 – 2014.

First, let’s give you an idea of what my life was like in those pre-ME years, in terms of the time I spent around other humans. I worked full-time for a homelessness charity called Cyrenians. My job was based in a small depot in Leith, Edinburgh, with a small team of staff and many volunteers. I also lived in Leith and had a ten minute walk to and from work everyday. I owned a beautiful flat in the Shore area, a top/fifth floor tenement flat with ninety eight stairs to my front door, in which I lived alone. I attended classes at the gym pretty regularly, both Spin and Body Pump. My gym was also in Leith, just round the corner from my work. I also attended an evening class, wood carving, which was again, in Leith. I volunteered with another couple of homeless charities. I socialised with friends on a weekly basis, whether in the pub, a restaurant, a coffee shop, or at the cinema, a concert or the theatre. I also enjoyed spending time alone (but surrounded by people) – reading a book in a coffee shop, exploring museums and art galleries, and I liked to make use of Edinburgh’s many green spaces, Holyrood Park, Arthur’s Seat, Princes Street Gardens, etc. I spent time with my family – my two sisters, my mum and my niece and nephew, who I babysat for fairly regularly. To get around Leith I mainly walked, but to go to the city centre, or anywhere else, I would use the bus. I travelled as much as I could. In those couple of years before ME I especially enjoyed travelling around the UK to see my favourite bands – my favourite bands rarely came to me, so I had go where they went. By turning a concert into a short holiday I got to see parts of the UK I’d never been to before, including Manchester, Cornwall, Halifax and Brighton. I also spent time in London and Kent roughly once a year. I went to Iceland for the first time and I completely fell in love with Reykjavík, and have returned a few times since then. This was my life pre-ME, in terms of the activities I did that involved being with or around other people. It was fun and I was enjoying myself, and despite being an introvert, it was full of people, but perhaps more importantly, it was only full of people as and when I chose to be around people. I was afforded that luxury before I had ME, now my illness dictates when I can be around people.

So, I calculated that, pre-ME, I spent at least 253.4 hours per month in the company of other people. I broke it down as follows…

  • An 8 hour work day Monday to Friday, and 4 hours every fourth Saturday. I haven’t included any overtime.
  • I estimated 18 hours per week for the other activities in which I was in the company of, interacting with, or in the vicinity of other people, as described above.
  • I lived alone pre-ME and I still do, so my time spent around other people will automatically be lower than anyone who doesn’t live alone.

I plan to write a blog post with the results of this project early-2020, or I might coincide it with International ME Awareness Month in May 2020, but I thought I would give you a sneak peek at January’s data.

img_1101
The total time I spent with or around other people in January 2019 was 22 hours. Of this time, 7 hours and 5 minutes were outside of my home.

So, as you can see, I have created categories for each person/set of people – my mum, who is also my carer, other family members, friends, medical, counselling, acupuncture, my cleaner, The Super Store (a shop between my house and my counsellor’s office) and the Sainsbury’s delivery man (for non UK readers, Sainsbury’s is a supermarket).

Each of January’s categories in more detail. 

My mum/carer – 16 hours

It’s important to note that when my mum visits me, it’s not always a social visit, these 16 hours include the time she spends doing various jobs for me around my home – washing my dishes, unpacking groceries, changing my bedding, filling my pill boxes, emptying my bins, etc. So when she’s here for an hour, possibly only half of that time will be spent in conversation. When I’m not feeling well enough for a proper visit she will leave after having done whatever jobs I need doing. So sometimes her visits will be as short as 5 minutes, if she’s only dropping off some shopping, for example.

Other family – 15 minutes

The 15 minutes of ‘other family’ time were when each of my sisters (one with her boyfriend and the other with my niece and nephew) attempted to visit me but I was too unwell each time, so could only have a quick hug/chat by the front door.

Friends – 0

I wasn’t well enough in January to see any friends or do anything beyond the essential (medical, counselling, my mum’s visits etc).

Medical – 1 hour

I had an appointment at Borders General Hospital in January. I have included the time spent in the waiting room. This entire outing took 3 hours, with around 1 hour, maybe a bit longer, being for the actual hospital bit, the rest being the time it took to get there and back. My mum drove me, so I included the travel time in the ‘mum’ category.

Counselling – 3 hours

My counselling appointments are 50 minutes long, but I’ve rounded it up to 1 hour, to include the time I spend walking there and back. This may seem insignificant, but my walk to and from counselling, even though I’m not interacting with any of the people I pass on the way, is the time of the week I feel the least isolated. It’s not just because I can see the other people, they can see me. I’m present, I’m not invisible, I’m out there, existing, not only in my life, but in the lives of the strangers who walk past me on the street. I would compare this to the time I spent walking to and from work, or the gym, or my evening class, or on the bus to and from the city centre in my pre-ME life. This is time spent in the vicinity of other people, but not interacting with them.

Acupuncture – 1 hour 20 minutes

My acupuncture appointments are in my home, roughly every two or three weeks. The actual acupuncture session is 30 minutes, but of course it takes a few minutes to update the acupuncture man with my symptoms since last seeing him and for him to put the needles in, so I log each acupuncture appointment as 40 minutes.

Cleaner – 15 minutes

My cleaner comes round when I have my counselling appointments, and I include the 5 minutes I spend chatting with her before I leave for counselling. Because I can only manage one ‘outside’ appointment per week, if I have a medical appointment, I will cancel that weeks counselling appointment. On those days, when I don’t have counselling, but I still have my cleaner round, I’ll retire to my garden shed to get out of her way, which is nicer than it sounds, my shed is quite lovely.

The Super Store – 5 minutes

The Super Store is a small health food shop just round the corner from my house. I don’t go in often, only occasionally when I’m passing on the way home from counselling, and when I do, I always feel noticeably worse the following day, so I really shouldn’t. I usually have my mum buy what I need from this shop, but sometimes it’s nice to go in and browse and do my own shopping, as though I’m an independent adult.

Sainsbury’s delivery man – 5 minutes

Finally, I included the short time I spent in the company of the Sainsbury’s delivery driver. It might not seem worthy of including, but if I haven’t seen anyone for a few days, those few minutes of interaction can make all the difference.

Outside

Of the total 22 hours I spent in the company of other people in January, 7 hours and 5 minutes of that time were outside of my home – this includes my one medical appointment at Borders General Hospital and the time it took for my mum to drive me there and back, my counselling appointments, and one 1 hour drive with my mum for a change of scenery. This 7 hours and 5 minutes isn’t just the only time I spent outside of my home around other people, but the only time I spent outside of my home in January full stop. This is why I describe myself as ‘mainly housebound’, as opposed to simply ‘housebound’, many people whose ME is more severe than mine are unable to leave their homes, or even their beds, at all. I don’t include the time I spend in my garden as being ‘outside’, I count that as being at home.

Some percentages. 

If the online percentage calculator I found was right (with my ME foggy brain I am not even going to attempt to work out the percentages myself), this means that I spent 91.31% less time in the company of other people in January than I did per month before I had ME.

The pre-ME figure of 253.4 hours was spent mainly outside of my home, so this means that the time I spent outside of my home in January was reduced by 97.11%, when compared to my pre-ME life.

On average there are 730 hours in a month, so based on January’s data, in which I spent 7 hours and 5 minutes of it outside of my home, I am 99% housebound.

I look forward to seeing how these percentages differ as each month passes.

What’s next.

I plan to write a blog post in 2020 with the results of this project. I don’t know yet how I will present the information, what observations I’ll make or what conclusions I will draw. It will be an evolving project, what seems important to me now may not seem so important when it’s time to bring all the information together, and I will add new categories as and when I need to. Hopefully the end result will be of some value, but even if it’s not, it’s a good excuse to play with spreadsheets and percentages, which despite being cognitively draining, I really enjoy!

About the title – This Is How We Become The #MillionsMissing.

I was given the idea for the title of this project by @JBKid7 on Twitter. When I shared my idea for the project with my January stats, @JBKid7 shared it with the caption “This is how ME affects us. This is how we become the #MillionsMissing.”.

If you don’t already know, #MillionsMissing is a global campaign for ME health equality. Lead by #MEAction, the first global protest/demonstration took place in May 2016 and has since grown each year to an astounding 100+ cities and virtual protests in 2018. We protest around the world for increased government funding for research, clinical trials, medical education and public awareness. Most people with ME are too ill to attend the demonstration so they send in shoes with a label summarising their story to symbolise their support. The empty pairs of shoes are displayed at the protest as a striking visual image of the #MillionsMissing.

The name #MillionsMissing symbolises the millions of people with ME who miss out on everyday life, and the millions of pounds missing from biomedical research into this devastating illness. In terms of missing out on everyday life, I thought this would be the perfect title for my project. There are approximately 17 million people with ME worldwide, 250,000 of them here in the UK. That’s a lot of people missing out on everyday life. We are the #MillionsMissing.

 

NEWS

Health Rising. Metabolomics Study Suggests Chronic Fatigue Syndrome May Be Oxidative Stress/Low Oxygen Disease

https://www.healthrising.org/blog/2019/02/08/metabolomics-chronic-fatigue-syndrome-oxidative-stress-low-oxygen/

Frontiers. Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

PLOS Blogs. Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much

https://blogs.plos.org/absolutely-maybe/2019/02/08/consumer-contested-evidence-why-the-me-cfs-exercise-dispute-matters-so-much/

Bustle. How To Find A Doctor When You Have ME/CFS, Because The Process Can Be Challenging

https://www.bustle.com/p/how-to-find-a-doctor-when-you-have-mecfs-because-the-process-can-be-challenging-15536013

Virology Blog. Trial By Error: HRA Report Does Not Vindicate PACE

http://www.virology.ws/2019/02/06/trial-by-error-hra-report-does-not-vindicate-pace/

White House Chronicle. The Deadly Hurt of Loneliness — It Kills

http://whchronicle.com/the-deadly-hurt-of-loneliness-it-kills/

Springer Link. Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?

https://link.springer.com/article/10.1007/s11011-019-0388-6

 

Advertisements

Post Thirty Two. Some Things I’d Like My Visitors To Be Mindful Of.

This is a difficult post for me to publish. I find it hard to assert myself and let people know what I need, and that’s what I’m doing in this post. What I’m sharing here may be hard for non-ME people to understand, and if you’re someone who likes to visit me, it may be a bit of a nuisance to put into practice.

I have no reason to try and put off anyone from visiting me. I want people to visit me, the isolation I live in is a major factor in the decline of my mental health. But there are certain things that I need from my visitors, not because I’m trying to be awkward, but because it otherwise affects my health, sometimes severely. I worry that I may be thought of as being overly pernickety, and if it means I have even fewer visitors, then so be it. My priority is my health. I never feel well, but I want to feel as well as I possibly can, and nothing is more important to me than trying to keep my ME from becoming any more severe, that’s if I even have any control over it. I tend to think that maybe, if I can do all I can to try and minimise my day-to-day suffering, maybe it will affect the longevity and severity of my illness.

Socialising, interacting and communicating with people uses a tremendous amount of energy. This is something I had no concept of until I had ME, and I’m not sure that I can expect non-ME people to be able to identify with this at all. I can cope with visitors every now and then, but not often. Apart from my mum, on average I maybe have an additional visitor every three or four weeks or so, although it’s not unusual for me to go much longer without seeing anyone who isn’t my mum, or a doctor or my counsellor etc.  When I have a visitor, depending on how I feel on the day, I will start to flag and feel my symptoms worsening within an hour, usually after about fifteen minutes or so. But because I crave human company so badly, and I have so little of it, I do sometimes push myself and exceed my limit, knowing I will suffer for it.

It really takes it out of me when I socialise with one person, socialising with two people is even harder, and socialising with three or more people generally results in a bit of a disaster for me. It took me a while to understand what it is that causes my symptoms to worsen when/after I spend time interacting with one person, but I do now, and of course it stands to reason that it will be so much worse with more people. Just being in the presence of another person is harder on me/my energy levels than being alone, even if all we’re doing is sitting together in silence. ME has made me hypersensitive to stimuli outside of my body, including heat, noise, light, scent and movement. So obviously when there are more people, there will be more noise, more movement, etc. This results in a sensory overload for me. It’s additional stimuli for my already overtaxed body to take in. It’s like an assault on my senses.

There are no guarantees, ME does its own thing and I do not want to create the impression that people with ME can control the progression of their illness. It seems clear to me that there are different subsets within the ME diagnosis, and there does seem to be a progressive/degenerative version, which I suspect I have, given my gradual deterioration since the onset. ME is a neurological illness, and it cannot be cured or treated with lifestyle/behavioural changes. However, there are some things that I can do to manage my symptoms and attempt to mitigate the payback, but it’s not fool proof and it frequently doesn’t work (the payback, or crash, officially known as Post-Exertional Neuroimmune Exhaustion, is the worsening of my symptoms after I have overexerted myself).

So, when I have someone visit me, I will do the following – I will rest and do as little as possible the day before their visit and I will have nothing but rest planned for the following day. I will lie down and rest with my eyes closed, in a dark cool room, with my noise cancelling headphones on, immediately before (at least thirty minutes) and after (as long as it takes) their visit, never with the TV on, but sometimes with relaxing music or in silence. I will control the temperature and the light, as best I can. I will ask them to bring the coffee, so I am spared the effort/exertion of making it myself. I will make sure I have no other visitors or medical outings in the days before and after their visit. My visitors may think that for me, their visit begins when they arrive, and ends when they leave. Wrong. The preparation for, and the effects of a visit, goes far beyond that one day.

When I have someone visit me, I have to put so much thought into it, it pretty much has to be planned like a military operation. Every single thing I do has to be risk assessed. I always have to think about how one activity will affect another. My life takes far more careful planning now than it did pre-ME, and it’s what I have to do in order to manage my illness. I cannot just let life happen. My experience so far has taught me that I need structure and routine. I need to know as much as possible, what is going to happen and when. I need my week(s) ahead to be mapped out. Even pre-ME I found that having order in my life was soothing, but since having ME, it’s also become essential for my well-being. Not everyone will be able to identify with this. There are people who do not need or want to live like this, and that’s fine. It’s also fine that I do need and want to live like this. There is no right or wrong way. Take going on holiday for example. I like to get to the airport with as much time to spare as possible, I take the recommended arrival time seriously and if I’m running late I feel anxious and I don’t enjoy it. Whereas some people don’t mind arriving at the airport with little time to spare, rushing through security and arriving at the gate when the plane is already boarding. Neither of these approaches to life are right or wrong, one isn’t better than the other, they’re just different.

So, I’m finally getting to the point of this post. While I do what I can to feel as well as possible and reduce payback after I have someone visit me, there are also things that my visitors can do. I’ve never written about this before because I don’t like to put people out. I would rather be inconvenienced myself, than cause inconvenience for someone else. But now there’s more at stake, it’s not just inconvenience, it’s my health, my symptoms, it’s how my body feels, it’s the difference between a better or a worse day/week for me, and it’s potentially the longevity and severity of my illness. It seems ridiculous that I feel bad for asking what I’m about to ask. I fear that I’ll be seen as being unnecessarily difficult, or precious, and will alienate people as a result. I also worry that people might feel nervous about visiting me for fear of ‘doing something wrong’. But, these are things that would genuinely help me, and I’d like to think that the people who visit me like me and care about me enough that they will be happy to keep them in mind.

Here we go.

When I have a visitor, I need to know in advance what time they plan to arrive, and if it changes, I need to know as soon as possible.

When my visitor hasn’t committed to a time in advance and I’ve only been given a vague window of time for their arrival, the waiting and the anticipation of their arrival uses a great deal of energy, in the days running up to their visit, and on the day itself. More use of energy of course means more symptoms for me.

I have on a few occasions, after waiting for my visitor but not knowing when they’ll arrive, ended up feeling so unwell that by the time they get here, I’ve had to send them away. So we both miss out on seeing each other. It’s maybe an inconvenience for them, but they can at least get on with their day, I however will be paying for the additional (and unnecessary) use of my energy for the rest of the day, and possibly the next day, and the next… The only way I have found to prevent this from happening is to arrange a time as far in advance as possible, preferably at the point of the arrangement being made. It may mean that I see fewer people, and less often, as it’s not necessarily compatible with the lives of the people I know, but I cannot do spontaneity, vagueness or uncertainty.

Here are a couple of scenarios:

  1. A visitor tells me they will be in town on Friday or Saturday the following week, they’d like to visit me and they’ll let me know which day it’ll be on Thursday, and then confirm the time on the day.
  2. A visitor is coming by bus, the bus is due to arrive at 3.30pm and they’ll go to Costa on the way to mine, so they aren’t sure exactly what time they’ll arrive.

Scenario 1 is what I cannot do. On this occasion I will have to tell the visitor that this arrangement doesn’t work for me. If they’re unable to arrange the day and time now, then let’s wait until we find a date that they can.

Scenario 2 is fine. I’m not unreasonable. I know that no one can predict to the minute what time the bus will actually arrive, or how long the queue in Costa will be, or how many people ahead of them in the queue will order those iced blended drinks that take ages to make. In this scenario I can make an educated guess. I know what time their bus was scheduled to arrive, and I know roughly how long it can take when Costa is busy.

It’s probably not surprising to hear that I also cannot do spontaneous visits. I cannot cope with ‘pop-ins’, when people just turn up and knock on my door. I actually don’t answer my door if I’m not expecting anyone. I won’t use precious energy for a Jehovah’s Witness or a courier who’s at the wrong house. There are occasions when I’ve made an exception and accepted a visitor on short notice, like a friend who texts me to say they’re nearby and do I fancy a visit. Of course it very much depends on how I’m feeling at the time, and while it’s rare, it’s not completely out of the question for me to then invite them over for a short visit. So if in doubt, please do still ask, but don’t be surprised if I can’t manage it, and please don’t be offended. When it’s me who reaches out to someone with little notice to ask if they’re free that day/evening , it’s usually when I’m having to prioritise my mental health over my ME, and in the need of company.

While I was thinking about the the whole anticipation/waiting thing, and not quite understanding it, I reached out to one of the ME support groups I’m in and I asked if anyone else experiences this. Of the thirty four replies I got, every single one of them told me that they experience this too. ME is one odd illness.

I need my visitors to be on time, not too early and not too late.

I have to rest immediately before I have a visitor, and if the visitor arrives earlier than planned, my rest will be interrupted and as a result I will manage less time with my visitor and the crash will be more severe. If they are late, well this is similar to the above scenario, the waiting and anticipation will use so much more energy, which will exacerbate my symptoms and I may end up feeling so unwell by the time they arrive that I’ll have to send them away, and I don’t like doing that.

I’m not going to be completely militant about this, it’s not a case of needing my visitor to arrive at 16:00 on the dot or else they’ll be sent away. I appreciate that interruptions do happen. It’s not unheard of to be stuck behind a tractor when driving or on the bus to Peebles. Being in the countryside means cows can escape their field and wander around on the road very slowly and without any urgency to go back to their field. Their phone could ring as they’re leaving the house to come and visit me and they get held up. I know this. I’m really just asking that if anything does happen that could make my visitor late, I’d like them to let me know as soon as they realise, so I can then make an informed decision about whether it would be best to cancel/postpone the visit or not, and I’m not left wondering.

I need my visitors to move carefully and slowly, with no sudden movements.

I’ve mentioned before that I’m hypersensitive to movement, not all the time though, it varies. This sensitivity to movement is why, if a visitor offers to wash my dishes, I might turn down their offer. It’s not out of pride, or not wanting to inconvenience them, it’s because in that moment, I cannot cope with the movement (or noise – see below) within my vicinity.

This also affects my use of the internet. If it’s a worse day, I cannot bear when I’m scrolling down Facebook, or whatever, and a video automatically starts playing. Both the movement, flashing images and/or the noise will trigger vertigo-like symptoms. I recently wanted to watch something on BBC iPlayer, but it had a woman using sign language in the corner of the screen, with no option to watch without it. While it’s very much a good thing that this is available, I couldn’t cope with the movement in the corner of the screen as I tried to concentrate on what I was watching. I thought it was interesting though, that by making something more accessible for one set of people, it can make it inaccessible for others.

Now of course I don’t expect people to stay perfectly still, they don’t have to be statues. I would just like my visitors to be mindful of this and be aware of the effects of wild hand gestures and sudden unexpected movements on my already struggling brain. If it’s the result of a huge sneeze, or anything they have no control over, then of course that’s ok.

I need my visitors to speak at a low volume and not too fast, and to remove their shoes and coats downstairs and leave any noisy plastic bags downstairs.

I am hypersensitive to noise. I have always been sensitive to noise, even pre-ME, my hearing is annoyingly good and unwanted noise (from neighbours for example) makes me very anxious and puts me on edge, it still does, but since having ME, noise actually causes me pain. This is why I wear my noise cancelling headphones all day, apart from when I’m sleeping, when I use ear plugs.

This is one of the trickier ones for me to navigate, because noise is everywhere. My brain cannot cope with noise coming from more than once source at a time. When I’m alone, my headphones help with this, as I can listen to music or watch TV through them, while blocking out (most of) the other sounds around me. But I have to take my headphones off when I have visitors, so I can hear them properly, but it also means I can hear all the other noises – my fridge humming, the radiator, people on the close outside my house, traffic in the distance, birds singing, dogs barking, etc. It’s really difficult to explain how a noise/sesnory overload like this makes me feel, but it’s excruciating. I can feel my body and my mind deteriorating, it’s like – Harry Potter spoiler ahead – you know how when Voldemort dies in the film and he kind of disintegrates, I feel like that is what’s happening inside my body and my mind. It affects my ability to absorb and understand what the other person is saying to me, almost as though they’re speaking in a foreign language that I don’t understand, but they use English for every fourth word. I struggle to process their words and apply any meaning to them. I lose my ability to think and formulate a response. This is basically what brain fog is. Eventually it will also cause me to get a headache, I’ll feel faint (in that room spinning way when drunk), then my muscles and my limbs (especially my upper arms) will begin to ache, and quite randomly my shoulders will begin to ache too.

This is how my visitors can help me with this. If my visitor has a noisy coat (like a raincoat that rustles), I’d like them to remove it downstairs by the front door or in my bedroom, before coming upstairs to the living room. If they have brought us a Costa coffee and a snack for themselves, I’d like them to remove their snack from the paper bag or plastic wrapping, and use a plate, rather than eat it directly out of the bag/wrapper, which will rustle noisily with every movement (these rustley noises are the most painful for me). If they want to show me a video of something online, I’d like them to send me a link, so I can watch it in own time, with my headphones on, rather than play it then and there. I would like visitors to speak as softly as possible and to not speak too quickly, and to please not be offended if I ask them to speak at a lower volume or to slow down.

Again, I don’t expect visitors to be mute. I would just hope they could be mindful of this, and how it affects me, especially when there are more than two of us there.

When I have more than once visitor at a time, I need them to speak one at a time.

This is pretty much covered above. It’s difficult and draining enough for me to concentrate on what one person is saying, it’s so much more difficult when there’s a group of people, and more than one person talking at the same time. When this happens, as well as the symptoms described above, I simply zone out of the conversation altogether, and I may as well not be there.

Because it is a lot harder for me to socialise in groups, I don’t do it often, but sometimes it’s unavoidable, and sometimes I just want to, because it’s fun, and I still want to do fun things, but fun things of course use energy too.

I need my visitors to avoid using their phones in front of me.

As you’ll have gathered by now, I need to keep any stimuli in my vicinity to a minimum. This includes electronic gadgets, mine too. I try to remember to turn my phone over when I have company so I won’t be distracted at the arrival of a reminder or a text message. This goes for my visitors phones too. Any noise, light or moving images that suddenly appear is more for my brain to take in, which uses more energy, and therefore I fade faster. I also find that it divides my concentration, which makes it harder for me to absorb and process information. I find it harder to keep my concentration on the person, when their concentration is on their phone. I’d rather be able to focus my attention entirely on them, when my attention is split, the brain fog and dizziness set in sooner.

I need my visitors to be scent/fragrance free.

This is a newer one for me, and it’s extremely difficult to put into practice. I am now unfortunately very sensitive to scents/fragrances. It’s incredibly annoying for me and for my visitors.

The person I see the most of is my mum. She has had to replace all her soap with fragrance free versions and she can no longer wear perfume. She can’t even wear it when she’s not with me, as it will transfer onto her clothes, and if she re-wears something, forgetting that it’s been in contact with perfume, I will then suffer for it. It makes me feel lightheaded and causes pain between my eyes, my head and the back of my throat in a ‘if this gets worse I’m going to struggle to breath’ kind of way.

I have also replaced my soaps and my washing up liquid with fragrance free varieties. I’m still looking for household cleaning products, I’m sorted with the laundry though as I already use an Ecoegg. I’m keeping hold of my perfumes in the hope I will be able to use them again one day.

This is a really hard one, because it feels completely unreasonable for me to ask people to ensure they are fragrance free when they visit me. I don’t feel I can ask people to change their shampoo, conditioner, soap, laundry detergent etc. I think all I can ask is that my visitors try to keep it to keep it to a minimum, like, not wear perfume if they are seeing me that day, and not wash their hair the morning they are visiting me, etc. They should also be prepared that if they are scenty, I will have to open the window, however cold it is, and I might also have to ask them to leave, if/when it becomes too much for me.

I can’t have visitors who are feeling unwell themselves and are potentially contagious.

ME, as well as involving dysregulation of the central nervous system, also involves dysregulation of the immune system. This means that my immune system is compromised, and I am therefore more susceptible to catching colds, flus, infections etc.

So far I’ve been pretty lucky, I haven’t had that many illnesses on top of my ME, unless I have but I haven’t noticed, which is actually fairly likely. I could have a worse few days or weeks, and not realise it’s because I have the flu or a cold. This happened in 2016, and it turned out I had Tonsillitis, but I hadn’t realised, and I ended up needing my tonsils removed. However, even though I have been fairly lucky up until now, that doesn’t mean I am prepared to take risks.

When I catch a bug it will take me longer to recover, it can cause complications involving my ME, it could also trigger a relapse and it has the potential to push my already severe ME into very severe ME. It is therefore very important that my visitors are feeling well themselves. I cannot have someone visit me if they have some kind of bug, or even if they have that feeling that a cold, or whatever, is on the way.

It’s also important that my visitors practice good personal hygiene, especially if they’ve travelled by public transport or have been handling money, or anything that’s particularly germy. I’m not going to police this, I think I can trust my visitors to know when washing their hands will be necessary, and my bathroom is handily right by my front door, for those who want to wash their hands upon arrival. Also, and this is basic common sense and good manners, I would hope that any visitor I have will always cover their mouth when they sneeze, cough or yawn.

If you’re wondering, I am eligible for the free flu vaccination (the flu vaccine is offered free on the NHS to people in certain at-risk groups, mainly people who are at greater risk of developing serious complications if they catch flu) but I have decided against it. I am by no means an anti-vaxxer, I don’t get the flu vaccine because it’s quite common for people with ME to suffer a relapse after having the vaccination. According to the ME Association… “This could be because research into immune system dysfunction in ME/CFS has found evidence of what is called immune system activation – which equates to a persisting and overactive immune response to a triggering infection. Vaccines are designed to mimic the infection they are supposed to protect against and so they also trigger an immune system response.”. It has been advised that an adverse reaction to the flu vaccine is more likely to occur in people with ME who have on going flu-like/infection symptoms, such as swollen glands, sore throats and problems with temperature control etc, which I do, these are perfectly normal everyday symptoms for me. So I personally have chosen not to be vaccinated.

Shoes off please.

This doesn’t directly affect my symptoms, but it seems a good time to mention it. I prefer people to remove their shoes by the front door before coming upstairs to my living room, or my bedroom etc. This is because, any dirt that gets trailed in, after their visit, I won’t be able to clean it up. Vacuuming is out of the question for me as it uses so much energy, I don’t have the strength to hold the vacuum cleaner and I can’t stand for long enough. But if anyone has a genuine need to keep their shoes on, they won’t be banished, I’ll just ask them to give their feet an extra good scrub on the doormat.

The Science!

Since I’ve been writing this post I’ve been doing some research to try and find some articles to share that may help explain these particular symptoms. I found two, one is about the dysfunctional autonomic nervous system in people with ME, and the other one is about a neurological process called sensory gating, which I had never heard of before. I have shared some excerpts from each article below, to read them in full, just click on the title of the article.

This document created by The ME Association explains why stimuli outside the body, such as noise, heat or emotional stress, causes the reaction that it does.

The Dysfunctional Autonomic Nervous System in ME/CFS – The ME Association

Altered autonomic nervous system (ANS) functioning has been frequently reported in patients with ME.

The nervous system spans the whole body, connecting all our organs and tissues with each other and the brain, sending messages between them. It is split into two systems: The central nervous system and the peripheral nervous system. The autonomic nervous system (ANS) is the involuntary branch of the peripheral nervous system. Involuntary means that it controls most of our unconscious actions, that, most of the time, we aren’t aware are happening; such as breathing, digestion and the beating of our heart, so it’s like an auto-pilot system.

The ANS has influence over muscles and glands throughout the body and controls a whole range of things, including heart rate, breathing, salivation, digestion, perspiration (sweating) and urination. The ANS is further subdivided into two opposing sections; the sympathetic and the parasympathetic nervous systems. These two divisions have a sort of yin-yang relationship; they both act on the same parts of the body but produce completely opposite effects.

The sympathetic nervous system (SNS) likes to speed everything up (get you ‘hyped’) and is best known for stimulating the ‘flight or fight’ response, having effects such as increased heart rate, increased breathing, dilated pupils, slowed digestion, and increasing blood-flow to the muscles in preparation for movement. On the other hand, the parasympathetic nervous system (PNS) likes to calm you down (relax you)
and is known for the ‘rest and digest’ response, having opposite effects to the SNS, such as slowing your breathing, reducing your heart rate, constricting pupils, and encouraging digestion.

When in balance, these two systems work together well in the body. However, they are selfish systems as when one is working, the other one cannot; one must be  switched off’ in order for the other to work – they cannot both work at the same time. Understandably, the sympathetic nervous system is very energy demanding, whilst the parasympathetic nervous system, is energy conserving.

ME/CFS patients tend to have reduced parasympathetic activity, and increased sympathetic activity, known as “sympathetic nervous system predominance”. This same ANS dysfunction is seen in healthy people after engaging in acutely fatiguing tasks, and the lack of parasympathetic activity appears to correlate to feelings of fatigue. The difference is that in CFS, the ANS dysfunction happens after much lower levels of stress or activity.

In simple terms, people with ME/CFS are hyper-sensitive to anything from infections and pain within the body to stimuli outside the body, such as noise, heat or emotional stress. The body is stuck in a high-alert – ‘we need to defend ourselves from all threats’ – mode (otherwise known as the ‘fight or flight response’, stemming from the sympathetic nervous system).

Naturally, being on a constant state of high alert, quickly drains the body of energy and can result in other problems, such as gastrological symptoms, as digestion is not a priority in this state. The sympathetic system puts many organs and processes into overdrive and deprives other areas of blood and oxygen, so this is not an ideal state to spend most of your time in!

This is a guest post from the Health Rising website in which the author sets out a hypothesis for a single neuroinflammatory process as the core pathophysiology underpinning ME.

‘Sensory Gating’ – A Key to Chronic Fatigue Syndrome (ME/CFS)? – Health Rising

First a short questionnaire….. Would you agree or disagree with below statements?

  • My hearing is so sensitive that ordinary sounds become uncomfortable
  • There have been times when it seems that sounds and sights are coming in too fast
  • It’s not bad when just one person is speaking but if others join in, then I can’t pick it up at all. I just can’t get into tune with that conversation
  • There are days when indoor lights seem so bright that they bother my eyes.
  • I have more trouble concentrating than others seem to have
  • I seem to hear the smallest details of sound
  • When I’m tired sounds seem amplified

These statements are taken from a questionnaire developed to assess problems with something called ‘sensory gating’. If you answered yes to several of these or other similar questions you could have problems with sensory gating.

“Sensory gating describes neurological processes of filtering out redundant or unnecessary stimuli in the brain from all possible environmental stimuli. Also referred to as filtering, or sensorimotor gating, sensory gating prevents an overload of irrelevant information in the higher cortical centres of the brain” Wikipedia

Three common phenomena that may be disturbed if there is a problem with sensory gating are ‘the Cocktail Party Syndrome’, the ‘Seat of the Pants’ phenomenon and the ‘Startle Reflex.’

In the ‘cocktail party syndrome’ it’s difficult to carry on a conversation with in a room because we have difficulty filtering out the noise of others. In the ‘seat of the pants’ phenomenon we have difficulty attending to the outside world because nerve impulses signalling the body is in contact with a surface don’t get filtered out as they should.

If we hear a loud bang we jump but if the noise is repeated several times and nothing untoward happens then eventually we learn to ignore it through a process of habituation and it becomes just so much more background noise. However, if our brains keep attending to the jackhammer or the door shutting or banging or whatever, again we don’t have much room left to attend to what’s in from of us.

It’s easy to imagine the ‘information overload’ if all these signals and others, reached the conscious mind on an on-going basis.

An important point to note though is that these mechanisms operate at the pre-conscious level. For example a sudden loud noise will elicit a startle response regardless of whether or not we had previously identified the noise as dangerous or harmless. It also appears that the strength of the startle response varies between individuals.

It may be hypothesised that ME/CFS patients, if tested, would show a deficit in neurological sensory gating and that this gating deficit may give an insight into many of our common and not so common symptoms.

So, if I’m right, when I am overstimulated due to my hypersensitivity, my body gets stuck in this state of ‘high alert’ or ‘fight or flight’. Being in this state drains my body of energy and puts my organs and processes into overdrive while depriving other areas of blood and oxygen. I feel worse as a result. It doesn’t explain why I feel worse when I’m waiting for someone, but it’s maybe something to do with the feeling of anticipation, which could maybe create this state of high alert. But I’m no scientist, I could be wrong.

Almost Finished

I hope that what I have shared in this post will prove helpful for those who visit me. It’s basically just me asking my visitors to be mindful of the things I need to remain as well as possible. Of course ‘well’ is a relative term here, I’m never well, but you know what I mean.

I’m so grateful for the people who do visit me. I enjoy their visits, I’m unable to go to them, so when they come to me, they provide me with little pockets of real life. When I’m with non-ME people I like to hear about their lives. I know some people with ME find it really difficult to hear about what their healthy friends and family are doing, and I get it, I feel that too, but more often than not, I find these visits make me feel more connected to the outside world.

I also want to it to be known that it’s not always easy being a friend or family member to someone with severe ME. It’s especially hard on the immediate carer(s), but it’s also hard on everyone else in their life. My hope is that, by explaining why I have to do things a certain way, it will help my visitors to understand that if I ever have to cancel a visit, or turn down an offer of a visit that was made on short notice, or cut a visit short, it’s never personal. ME dictates everything I do, there’s no ‘fighting’ this illness. My best hope of feeling better is to give in to my illness. This doesn’t mean giving up, it means listening to my body. It means resting when my body needs to rest, to have silence when my body needs silence, etc etc. I hope that by aiding my visitors in their understanding, when I do have to cancel a visit, or whatever, they will be able to deal with it graciously, because they’ll know that I’m not saying “I don’t want to see you”. I’m simply doing what my body needs me to do, to allow it to feel as well as possible and hopefully one day regain some function and improve my quality of life.

 

NEWS

Springer. Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy

https://link.springer.com/article/10.1007/s11682-018-0029-4

Stat News. The NIH is thwarting research on a poorly understood yet serious condition

https://www.statnews.com/2019/01/10/nih-obstacles-thwart-myalgic-encephalomyelitis-research/

Sage Journals. Changes in the transcriptome of circulating immune cells of a New Zealand cohort with myalgic encephalomyelitis/chronic fatigue syndrome

https://journals.sagepub.com/doi/abs/10.1177/2058738418820402

Health Rising. Decoding the 2-day Cardiopulmonary Exercise Test (CPET) in Chronic Fatigue Syndrome (ME/CFS)

https://www.healthrising.org/blog/2019/01/17/decoding-2-day-cpet-chronic-fatigue-syndrome/

Health Rising. Not Fatigue After All? New Model Suggests Other Symptoms Better Explain Chronic Fatigue Syndrome (ME/CFS)

https://www.healthrising.org/blog/2013/01/17/not-fatigue-after-all-new-model-suggests-other-symptoms-explain-chronic-fatigue-syndrome-mecfs-better/

Simmaron Research. Could the Gut Cure Neuroinflammation? An MS and ME/CFS/FM Inquiry

http://simmaronresearch.com/2019/01/gut-cure-neuroinflammation-m-s-mecfs-inquiry/

The ME Association. US study of onset patterns and course of illness in ME/CFS 

https://www.meassociation.org.uk/2019/01/mea-summary-review-us-study-of-onset-patterns-and-course-of-illness-in-me-cfs-29-january-2019/?fbclid=IwAR0d0-az2FwWdoRm31B19IuNcXhss6-i24oDz6nGBhndMONCzLMVu6wmOKc

Health Rising. The Hummingbird: Could a Blood Flow Enhancer Help With Fibromyalgia, POTS and ME/CFS?

https://www.healthrising.org/blog/2019/01/29/hummingbird-fibromyalgia-pots-chronic-fatigue-syndrome/

Health Rising. Hypocapnia Cerebral Hypoperfusion: New Kind of Orthostatic Intolerance Points to Key Factor in ME/CFS and Others

https://www.healthrising.org/blog/2019/02/01/hypocapnic-cerebral-hypoperfusion-orthostatic-intolerance-chronic-fatigue-syndrome/

Post Thirty One. A Blog Post (Mainly) About My Blog – Looking Back & Looking Forward.

My blog was fairly quiet in 2018, with only eight posts. In comparison, I published fifteen posts in 2017, and eight posts in 2016, the first one being in August 2016. My reduced output has been a result of my worsened health and my various other commitments, which all contributed to the worsened health. The majority of 2018 was spent working on my PIP application and ESA renewal (disability benefits/social security), I also spent a lot of time going back and forth to my numerous hospital appointments – two Urology appointments, two Neurology appointments, one Gynaecology appointment, one CT scan, one MRI scan, a pre-op assessment and my Endometrial Ablation procedure. I’m hoping I’ll see fewer doctors this year, although it’s currently eight days in (to 2019) and I’ve already seen one consultant and had an ultrasound – I got to spend Christmas thinking I might have breast cancer – I don’t (phew), and I’m seeing another consultant in March – Gynaecology, again. I am hoping however that I’ll be a bit more prolific with my blog in 2019, I have so much I want to write about.

Stats

I’ve been thinking about what marks the success of my blog. It’s still a baby in the blogging world, when taking the numbers into account, but I take pleasure in seeing the number of people visiting my blog increasing steadily since I began it, from the hundreds to the thousands. I now have almost seven thousand readers, and almost twelve thousand views.

I also love to see how far reaching my blog has become. It seems completely unreal that there are people reading it all over the world. My blog is being read in sixty nine countries, that’s over one third of the world’s countries! See for yourselves!

Blog countries (2)
Argentina, Australia, Austria, Belgium, Brazil, Cambodia, Canada, Chile, China, Costa Rica, Croatia, Czech Republic, Denmark, Egypt, Estonia, Finland, France, Germany, Gibraltar, Greece, Guatemala, Guernsey, Honduras, Hong Kong SAR China, Hungary, Iceland, India, Indonesia, Ireland, Isle of Man, Israel, Italy, Japan, Jersey, Kenya, Lithuania, Luxembourg, Malaysia, Malta, Mexico, Monaco, Morocco, Netherlands, New Zealand, Norway, Pakistan, Philippines, Poland, Portugal, Qatar, Romania, Russia, Saudi Arabia, Senegal, Serbia, Singapore, Slovenia, South Africa, Spain, Sweden, Switzerland, Taiwan, Thailand, Trinidad & Tobago, Tunisia, United Arab Emirates, United Kingdom, United States and Vietnam.

Feedback

While the stats do make me happy, what means the most to me, is the positive feedback, especially from the ME community. When other people with ME can identify with what I’ve written, when they tell me how accurately I am portraying the illness, when they find comfort in it, when they use it to help educate the people in their lives, it is beyond anything I expected. I am now going to shamelessly blow my own trumpet. Here is a small selection of some of the lovely feedback that I have received.

A comment on Facebook about Post Nineteen. Time For Unrest. 

“I think this is probably the best piece of writing on M.E. I have ever seen. Smiling through the tears. Thank you.”

Someone shared my blog in the Phoenix Rising forum.

“I’ve only just discovered this blog, though I imagine others here in PR will already know of it. Not read all of it by any means, but what I read is good… in the sense it conveys well how bad life can be with ME. And Phoebe, whose blog it is, conveys a good sense of her own self, and hence how ME impacts her, and from that how so many other people are impacted by ME.”

A conversation between two people on Twitter about Post Twenty Seven. No, I’m Not Tired.

Person One: “The best coverage on the subject I’ve read in years.”

Person Two: “I was thinking the same thing – it sums up the situation beautifully!”

Person One: “Faultless and extremely comprehensive. Amazing though that so many words have to be used to explain the difference between fatigue and some other experience that probably doesn’t yet exist in any dictionary: hence, the art of description is a key aspect of this author’s triumph.”

A Facebook based ME support group shared my blog on their page. 

“I have a new favourite page! Love the posts, love the eloquence, love the wide range of M.E issues it focuses on, love the wealth of information … and I also love puffins and penguins! So it’s an all-rounder, really! Phoebe, who set up and runs the page, lives with severe M.E and I know from experience how much effort, energy and passion it takes to do this kind of thing, so please check it out if you can.”

The scariest post for me to publish was Post Twenty Six. How Having ME Has Affected My Mental Health. Having known people who have accused anyone who is open about their mental health struggles as “attention seeking”, I was really apprehensive about this post, but I received so much wonderful feedback.

“I very much admire the clarity and honesty of your writing. I recognise everything you say as true…your experience which you express so powerfully. I think you are a very special woman.”

“I want to thank you for your honesty and openness in expressing how your anxiety and depression affect you. Your courage in writing this and ‘socialising it’ is very powerful. It has arrived in my world at a time when I can say that from personal experience. I don’t have ME. My son does. But what you say rings very true for me sadly and that is validating. What you feel is what you feel and it’s important that others hold that intact and with respect.”

“You brave and wonderful person, as usual you have expressed so eloquently what many of us feel.”

“What an outstanding piece of writing. I and some of my close family have suffered from (non ME-related) clinical depression and your post perfectly encapsulates the feelings, desperation and hopelessness that depression produces.”

“I read your new blog yesterday. And goodness me it is so brilliant. So many of the things you write resonate deeply with things I’ve felt. And you’re just so good at phrasing things and expressing them. Also your raw and deep honesty is remarkable.”

“It’s brilliant. Really well written and really brave to put your feelings to paper. “

“You are amazing. I think your openness is admirable. People should hear. I’m really glad you are such a strong lady and still holding out and hate that you are having such a rubbish and painful time.”

University of Edinburgh

Something very unexpected happened in 2018. Every year the University of Edinburgh ask their Medical Sciences (BSc) students, as part of their module about long term illness experience, to talk, in pairs, to someone who lives with chronic illness or disability. These students go on to work as doctors, nurses, public health practitioners, research scientists or in other health-related occupations, and they consistently say that they learn the most from this part of the course.

I volunteered to be interviewed and within my email to the course lecturer I included a link to my blog. She replied to tell me that they actually had enough volunteers with ME, but she had read my blog, and thought it would make perfect study material for the module! As a result, my writing and experience reached all sixty students undertaking the course, and was discussed in class.

The class was in October, and I still feel amazed and honoured that my experience of ME was used in the teaching of the next generation of medical professionals, at least in this little corner of the world.

Borders General Hospital

I have been working on a post about my encounters with health professionals since having ME, both the good, the bad, and the downright disgraceful, but in the meantime, here’s one positive encounter I had with a doctor in 2018.

It was at my pre-op assessment appointment for my Endometrial Ablation. I always feel apprehensive about these appointments because I never know how they will react in the face of ME, I have no idea if my needs will be taken seriously, or mocked, or belittled, or just disregarded.

The doctor I saw was young, and, hold onto your seats, the first thing that came out of her mouth, was an apology, for not knowing much about ME. She told me it wasn’t covered at all at any point during her education/training. She asked me if it was ok to ask me some questions about my ME, and ME in general, because she wanted to learn. I was amazed and astounded. This so rarely happens. I have seen health professionals who haven’t heard of ME, or they have heard of it but know nothing about it, or they have heard of it but everything they think they know about it is incorrect, and whichever of these camps they fall in, they are rarely willing to learn from the patient. So I told her. I also gave her a card for my blog – I have some business-type cards for my blog which I always have on me – and I recommended that she watch the film Unrest on Netflix. She told me at the end of the appointment that she was going to spend the next weekend reading my blog and watching Unrest. Result! That’s one more doctor in the world who has a clue about ME.

What’s In Store For Me In 2019

I am hoping that this will be a better year, in terms of my health, blog output, benefits and stress levels, but I do have some big stuff about to happen.

I am planning on selling my flat in Edinburgh.

I moved out in August 2015 and have been renting it out since then. The plan was that the rental income would cover my mortgage, and I would eventually be well enough to move back in and get on with my life. I have now realised that this is not going to happen, the getting better, certainly not anytime soon. What I need to do, is to try and live as comfortably as possible, as I am, with severe ME. This means buying somewhere more suitable to live in Peebles and in order to do that, I have to sell my flat.

I have now given my tenants their notice, which I feel horrible about, I hate to be uprooting them, they’ve been good and hassle-free tenants, and when their tenancy ends, I will be putting my flat on the market. This has been a massive and terribly painful decision. When I moved out in 2015, it did not occur to me for one second that I would never move back in. Now, because I won’t manage the ninety eight steps up to my top/fifth floor flat, I’ll never even set foot in it again, not even to say goodbye.

I was so sure when I moved back to Peebles that it would only be temporary. I was even worried about what I would do if I was well enough to move back in within the first six months of my tenants lease, because within those six months, their tenancy was safe, it wouldn’t have been legal to kick them out. That’s how sure I was that I would recover. As sad as it is to think back to that time, I guess it definitively proves that ME cannot be cured by positive thoughts! Because back then, I absolutely positively thought I would get better, within months.

So anyway, this is big and scary decision, and it’s going to be a stressful few months, what will make it especially stressful for me, is that I have to trust other people to do everything for me. Relinquishing control will not be easy for me, actually, it will be excruciating, but I have no choice. Getting it ready for the publicity photos, the viewings, the packing, the removal of my furniture, all of it, will be outside of my control, which makes me feel sick.

I do however think that this decision perhaps signifies my acceptance of this illness, and my reality. The cottage that I live in now was only ever going to be temporary, and I’m now preparing for the long-term, the house that I will live in for as long as I have ME. If I do however get better, then I’m outta here! Peebles is a lovely town, but it was never where I imagined, or hoped, that I would spend the rest of my life.

I have also set a goal for myself this year. Partly because of a new rather annoying symptom in which I am sensitive to scents (in perfumes, soap, shampoo etc) and because I want to ensure that my presence on earth is doing as little harm as possible, I am planning on replacing all of my household cleaning products, toiletries and cosmetics with cruelty-free, unscented and preferably plastic free brands. I will be using up the items I already own, that I can tolerate, in terms of scent, because I don’t like waste, but I will slowly be replacing all of these products throughout the year.

This year I would also like to streamline my supplements. I want to be sure that the supplements I am taking are necessary, and I want to know if there’s anything I should be taking that I’m not. So I’m hoping to find a good, ME knowledgeable Nutritionist who is either local to me, or can do email/Skype consultations. If anyone can recommend someone, please let me know. Also, for ME people only, if there are any supplements you take that you think I should know about, please do let me know. I already take a few of the typical recommended supplements for ME people – CoQ-10, Acetyl L-Carnitine, L-Theanine, D-Ribose and B12, amongst others.

Now, this goes for all of you and for me, please remember that I have severe ME, this means that I may not be well enough to be successful in these goals, and I reserve the right to not meet them, and to not feel disappointed in myself because of it!

Finally, and slightly depressingly (not Brexit, although that is thoroughly depressing too), this year, on 28th February I will be “celebrating” my five year ME anniversary. While my more obvious ME symptoms didn’t start until late-summer in 2014, my first symptom, the one that started this whole thing, appeared late that night. I actually shared something on Twitter recently about how long I’ve had ME for, and someone commented saying she didn’t realise I was such a newbie, given how knowledgeable I am. This was really lovely to hear, especially from whatever the opposite of a ‘newbie’ is, ‘oldie’ sounds rude, but someone who has had far more experience of ME than I have.

 

NEWS

American Society of Hematology. Erythrocyte Deformability As a Potential Biomarker for Chronic Fatigue Syndrome.

http://www.bloodjournal.org/content/132/Suppl_1/4874?sso-checked=true

Health Rising. Could Poor Microcirculation Be Causing Chronic Fatigue Syndrome (ME/CFS)?

https://www.healthrising.org/blog/2018/12/04/capillaries-microcirculation-chronic-fatigue-syndrome-me-cfs/

Taylor & Francis Online. Genome-epigenome interactions associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

https://www.tandfonline.com/doi/abs/10.1080/15592294.2018.1549769?journalCode=kepi20&#.XAkeXL7haSg.twitter

ME Research UK. Visual aspects of reading performance in myalgic encephalomyelitis (ME).

http://www.meresearch.org.uk/our-research/completed-studies/visual-aspects-of-reading-performance/

Frontiers. The UK ME/CFS Biobank: A Disease-Specific Biobank for Advancing Clinical Research Into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

https://www.frontiersin.org/articles/10.3389/fneur.2018.01026/full

Health Rising. Ten Ways to Prove That Chronic Fatigue Syndrome (ME/CFS) is a Serious Illness.

https://www.healthrising.org/blog/2018/12/07/ten-ways-prove-chronic-fatigue-syndrome-serious-illness/

Cosmopolitan. 9 Rounds of Electroshock Therapy. 6 Years Lost. All Because Her Doctors Got It Horribly Wrong.

https://www.cosmopolitan.com/health-fitness/a25362145/electroshock-therapy-misdiagnosis/

Health Rising. Death in Chronic Fatigue Syndrome (ME/CFS) – What has it Told Us? The Autopsy Files.

https://www.healthrising.org/blog/2018/12/12/death-chronic-fatigue-syndrome-me-cfs-autopsy-files/

Presentation on ME/CFS from the OMF-sponsored Second Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University: Jarred Younger, PhD, of the University of Alabama at Birmingham on “How brain inflammation causes ME/CFS.”

Transcript: https://www.omf.ngo/wp-content/uploads/2018/11/EDITED-Jarred-Younger-How-Brain-Inflammation-Causes-MECFS.pdf

Watch: https://www.youtube.com/watch?v=8XrdSlpUQTE

Health Rising. Deconditioning Denied: Could a Large ME/CFS Study End the Deconditioning Myth?

https://www.healthrising.org/blog/2018/12/16/deconditioning-denied-chronic-fatigue-syndrome-deconditioning-myth/

Nick Brown’s Blog. Have scientists found an explanation for the onset of ME/CFS? 

http://steamtraen.blogspot.com/2018/12/have-scientists-found-explanation-for.html

Simmaron Research. The Probiotic Paradox: When Probiotics Fail or Even Do Harm – an ME/CFS Perspective.

http://simmaronresearch.com/2018/12/probiotic-paradox-probiotics-fail-even-harm-mecfs-perspective/

US National Library of Medicine. Peak Oxygen Uptake in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Meta-Analysis.

https://www.ncbi.nlm.nih.gov/pubmed/30557887/

Health Rising. Ten Ways To Prove That Exercising Will Not Cure Chronic Fatigue Syndrome (ME/CFS).

https://www.healthrising.org/blog/2018/12/28/ten-ways-prove-exercising-not-cure-chronic-fatigue-syndrome/

Valerie Eliot Smith. Changing the narrative #1: exploring a new approach to strategic communications in the ME community.

https://valerieeliotsmith.com/2019/01/07/changing-the-narrative-1-exploring-a-new-approach-to-strategic-communications-in-the-me-community/

Frontiers. Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning.

https://www.frontiersin.org/articles/10.3389/fped.2018.00412/full

Post Thirty. General Update – The Latest On My ME.

This has been a year of many referrals to specialists, which has resulted in a lot of hospital appointments. These referrals have all been made in an effort to find a way to manage some of my individual symptoms, and to rule out any cause, other than ME. I am very lucky that I have a GP who likes to see me every six weeks or so, and who takes my symptoms seriously. The previous GP’s and specialists I saw always brushed off any new or worsening symptoms as part of my ME. This of course is very likely, but it won’t necessarily always be the case, and we won’t know unless we investigate. This dismissiveness is what caused the delay in my Endometriosis diagnosis, and what put a halt to the bladder investigations. I hate to think that I could have had something more sinister going on, but, because of this attitude that many doctors hold about ME, it wouldn’t have been diagnosed until my autopsy! So I’m very grateful for my GP, I can always trust that she will take me and my symptoms seriously. 

With all these referrals and various other things going on this year, I haven’t been well enough to individually update all the people who are regularly in contact with me, so again I decided to write a general update here, for those who are interested. It’s an exciting adventure from my brain and spinal cord, via my bladder and uterus, to my hands and my feet!

Neurology

I saw my Neurologist again in November, the first appointment since I received my brain and spinal cord MRI scan results. When I first saw this Neurologist in May he said my symptoms were indicative of ME, and/or Multiple Sclerosis (MS). So the purpose of the scans was to confirm or rule out MS, and I guess to see if there was anything else visible that could explain my neurological symptoms. Well, as I kind of expected, my scans showed no abnormalities. So MS has now been ruled out, again.

I don’t know how I feel about that. Life with a MS diagnosis would be easier than life with a ME diagnosis, simply in terms of how each illness is regarded by other people. If I had MS, I would still be very unwell, but I could ‘just’ be unwell. I wouldn’t have to spend my time and energy educating people and putting right their misconceptions. But, if I had been diagnosed with MS, instead of ME, what would I do with my time? Currently the main that keeps me going – through the pain, the uncertainty, the loss, the grief, the isolation, the loneliness, the depression – is ME advocacy. I’m so invested in fighting for health equality for people with ME, what would I have done if I’d found out that I didn’t have ME? Ditch the ME advocacy and turn to MS advocacy? Except, MS doesn’t need the advocacy, not like ME does (MS, despite there being fewer than half the amount of people with MS than people with ME, gets considerably more funding for research). I expect I wouldn’t have been able to abandon my ME advocacy efforts, not now that I know what people with ME have to contend with – the misconceptions, the abuse, the neglect, the mockery, the lack of care, treatment and respect, and the chronic lack of both funding for biomedical research, and education for medical professionals. So, I would have been a person with MS, but advocating for people with ME, I would also have had to rename my blog, which would’ve been a pain in the bum, so I guess there is a silver lining in being stuck with ME.

I got to see my brain and spinal cord MRI scans, which was fascinating. I hadn’t realised just how tail-like the very end of the spine looks. Apart from a few signs of normal ageing, everything looks healthy. In fact, he saw fewer signs of ageing than he would have expected. So, I’m the most unwell I have ever been, I’m barely functional, but my brain (structurally) looks completely healthy. This was noted after my first brain scan in 2015 too, that it was an unusually healthy looking brain. Apparently most people have a few lesions, and above a certain number, it would be indicative of MS – I have none. My mum and I were discussing this after my appointment. Maybe the reason my brain isn’t ageing as would be expected is because of my ME brain fog, I do less thinking, and as a result, my brain looks younger! But I think it’s probably just down to luck, maybe genetics, who knows. I find it quite frustrating. On paper I’m the healthiest person ever, but in reality, my body is malfunctioning left, right and centre. I feel like I’m very slowly dying.

The most useful bit of the appointment was getting a name for my newest symptom, Myoclonic Seizures (non-epileptic seizures). They are fairly common in ME, especially severe ME, I believe, which makes sense given the neurological component of ME. There’s nothing I can do about them though, and unless I ever lose consciousness when it happens, they aren’t really anything to be concerned about. He did ask if I can try and record it on my phone the next time it happens, which I think might be a bit tricky.

Basically there’s nothing more he can do now. But I can arrange another appointment with him if I want to, to discuss worsening and/or new symptoms, or if I just want to speak to him about anything specific/neurology related. Given how most Neurologists treat people with ME, and my awful first encounter with a Neurologist in 2015, I think I’ve been pretty lucky this time.

Urology

I saw a new Urologist this year as well, which was prompted by the sudden worsening of my bladder symptoms in February. I had previously been diagnosed with Overactive Bladder Syndrome (OBS), but I was never quite convinced, the symptoms just didn’t match. The new Urologist seemed to agree with me, and said there was a test they could do which would confirm or rule out OBS, and again, the results came back normal, so I think that means the OBS was a misdiagnosis. Why the first Urologist I saw in 2014 didn’t do this test, I don’t know.

This doctor was also interested in the results of my MRI scan, specifically of the spinal cord, but again there was nothing visible in the scans that could be the cause of my bladder symptoms. So we’ve pretty much concluded that my bladder symptoms are simply ME symptoms, and the only chance of them improving, is if my ME as a whole improves.

The Urologist, in an effort to do something helpful, did refer me to a bladder nurse (that’s probably not her official title) who visited me at home. She asked me lots of questions about my diet and water intake etc, and said there are no improvements needed in that department, my diet is as healthy as can be. She asked if I had ever made notes of what I eat and when, to see if I notice a pattern in my bladder symptoms. I have already done this, and the only clear trigger is chilli. Since early/mid- 2014 I have not been able to eat chilli in any form – no fresh chilli, dried chilli flakes, chilli powder or paprika etc. Of all the food I am now intolerant to, thanks to ME, this is the most upsetting. I love chilli. I miss spicy food far more than I do alcohol, which I have also had to give up. I can tolerate pepper though, and I find white pepper to be the best substitute for chilli. Black pepper offers more flavour, but white pepper has more heat.

So, the bladder nurse left having told me that there’s very little she can offer me. As a last ditch attempt, she did suggest I start doing regular pelvic floor exercises again. I did do these back when I saw the first Urologist, and it didn’t help, but I thought it could be worth giving the exercises another shot. However, it turns out that pelvic floor exercises now cause me pain and in fact trigger my bladder symptoms, which is what I experience when I use tampons. I mentioned this to my GP (I had a forty five minute appointment with her a few days ago, to get through my mammoth list of maladies), and she told me to stop doing them. So that’s that. My bladder doesn’t like having ME.

Gynaecology 

Also this year, I was referred back to the Gynaecologist I saw in 2016, the same one who diagnosed my Endometriosis (the first Gynaecologist I saw in 2015 refused to investigate for Endometriosis as she believed those symptoms were ME symptoms). I mentioned in my last General Update post that I was considering Endometrial Ablation. This is the removal of the endometrium, or, the lining of the uterus. The purpose is to reduce the amount of blood loss during my period, or eliminate it altogether. It can only be done on women who either don’t want to have children, or don’t want any more children, because, while technically pregnancy can occur, it would be dangerous, and most likely result in miscarriage. Thankfully my doctor trusts that I know my own mind, and believes me when I tell him I don’t want to have children, and he agreed it would be a good solution for me. I had it done at the beginning of November.

It is often performed under a local anaesthetic, and that was what I initially wanted, thinking it would be gentler on my ME, but the doctor advised I go for a general anaesthetic. He said that even with a local, and pain relief, I would find it incredibly painful, specifically, the forceful dilation of the cervix, which they need to do to access the uterus, in order to burn the lining off, and he advised that anyone who hasn’t already experienced this (dilation) through childbirth, should go for a general. He said the intense heat from the actual burning off of the lining would be very unpleasant too, and that was the bit that actually changed my mind, also, my ME actually didn’t react too badly after my last two generals, so I chose the general and hoped for the best.

On the day of the surgery (well, it isn’t really surgery, given no incisions are made, but you know what I mean) I had to arrive at the BGH (Borders General Hospital) at 7.30am, which, due to my ME induced wonky sleep schedule, is the middle of the night for me. It meant my mum had to pick me up at 6.30am, and because I wasn’t allowed to drink anything after 5.30am, I got up at 5.25am so I could quickly take my morning meds with a glass of water. The early start was what I was dreading most about the day. I’m often unable to move and lift myself up for a while after I wake up (a ME symptom, it’s like a temporary paralysis), so when I have to get up at a certain time to make an appointment, to be sure I’ll actually manage to get out of bed in time, I need to set my alarm for one to three hours before I need to get up. I went for one hour on this occasion, which meant I woke up at 4.30am. I also rarely get to sleep before 1am, and on this night it was closer to 2.30am, so I went to hospital on two hours sleep. This early start however did give me something that I had been missing for the last four years, without really realising I’d been missing it. On the drive to the hospital, I saw the sunrise! It wasn’t the best sunrise I’d ever seen, but it was still pretty great. Living in such isolation, I’d kind of forgotten that the world is still turning.

I was the first surgery of the day, so thankfully I didn’t have to wait too long beforehand. I was wheeled along at 9am-ish, woke up at 10.08am, and I was discharged around 2.30pm. Overall, the actual being in hospital wasn’t as bad an experience as previous times. I don’t often experience this, but the nursing staff really took care of me. I felt like they always had it at the forefront of their minds that I wasn’t just a surgery day-patient, I was a ME patient too. They really did their best to make sure I was comfortable. Just being in hospital for a few hours, the early start and the drive there and back meant it was a huge day for me, in terms of ME, and far more than I can safely manage, meaning, without having a huge crash afterwards. So in these situations I always appreciate when the nursing staff try to mitigate any factors that could make it even worse for me, in this case, making sure I was in the quietest bit of the unit. When I had my tonsils removed in 2017, this did not happen. 

I’ve had five surgeries/general anaesthetics in my life, two were pre-ME, and the other three all since I’ve had ME. Something I’ve noticed with my last two anaesthetics, plus this one, is that I seem to feel remarkably well, in terms of my ME, for the rest of the day (of the operation), it continues through the following day, but the next again day I feel worse, and I continue to feel terrible until the crash wears off. It makes me think that there’s something in the drugs they gave me for the anaesthetic that helps my ME, and as the anaesthetic wears off, thirty six hours or so later, I then begin to feel the effects of the over-exertion and the surgery. When I say I feel remarkably well in the hours after the surgery, I don’t mean that I feel as well as can be expected for someone with ME who’s just had an operation, I mean, I feel better than I do even on my ‘normal’ ME days. Obviously I feel the effects of whatever the surgery was, in this case I had lower abdominal/pelvic pain, but it’s almost like my ME improves in the hours immediately after the anaesthetic. This makes me wonder, if I’m not imagining it, which of the drugs is it, and, would it be possible to be given a daily low dose of whatever drug it is? What is also really strange, is that, since having ME I’m usually so intolerant to medications, even really mild stuff, I tend to get all the side effects, and severely, so how does my body tolerate powerful anaesthesia drugs? 

I heard another theory recently, that people with ME recover from anaesthesia faster than other people. Or perhaps it would be more accurate to say, we ‘feel’ like we recover from anaesthesia faster. We’re used to feeling unwell, so, while a non-ME person will feel rough after an anaesthetic, people with ME just feel ‘normal’, because we always feel rough. I have no idea how accurate this is, but it is an interesting idea.

But anyway, after the effects of the anaesthetic wore off I did crash, badly, and I’m still not quite back to how I was beforehand. But this was to be expected given how full-on that day was. It’s too soon to tell how well the ablation has worked as it takes a few months to settle. I have had a period since the procedure, and while the bleeding has been minimal (which is good), it’s lasting longer (seventeen days so far, my norm is six/seven days), and it has been very painful, at times more so than my pre-ablation periods. I’m hoping it’s because my uterus is still healing, the inside of it is still an open raw wound, so having a period in a not yet healed burnt out uterus is bound to be painful, I imagine.

Oh, and one more thing, after the sunrise, the next best bit of the day was during my pre-op chat with the anaesthetist. While discussing my odds of a swift recovery from the anaesthetic, she said something along the lines of… “you don’t drink alcohol, you don’t smoke, you’re slim…” !!! She said I was slim! This may be rather superficial, but staying in control of my weight has been difficult since having ME, and is a source of anxiety for me. I can’t exercise, so diet is the only tool I have to manage my weight. Thankfully, I genuinely love eating the diet that I do. Giving up animals, animal products, refined carbs and refined sugars is not a hardship for me. I don’t count calories, I really don’t care what the calorie content is of the food I eat, I care more about knowing that everything I do eat, is doing me good. I also only eat two meals per day, partly because I’m only out of bed for ten hours each day, so I can’t fit in three meals, I also don’t have the energy to prepare three meals per day, and my appetite is smaller now, perhaps because I’m less active. Also, because I fit my two meals into a ten hour window, I spend at least fourteen hours per day not eating. This means that I am inadvertently following an intermittent fasting diet. Apparently going fourteen hours without food and having a ten hour eating window is the new trend in intermittent fasting. I don’t know if there’s any validity in this, but if there is, maybe that’s helping me control my weight too. So, anyway, given I always feel a bit on the podgy side, it was nice to be described as slim, and in a factual/medical way, not as a compliment by someone desperate to appease me. 

Hands

Have I mentioned this before? I can’t remember. I’ve been having some issues with my hands since late last year. Almost every day, usually late at night, my fingers and palms turn red and feel burny hot, it’s incredibly painful. It often happens when I’m trying to go to sleep, but the burny hotness prevents me from getting to sleep. I have to be touching something cold to get relief from the pain. So I try to get comfy, with my head on the pillow and my hands pressed against the cold walls. After a while, the same thing was happening with my hands, they go red and burny, but a finger or two turns waxy white and feels icy cold. It’s very odd, but I can at least press the icy cold fingers against the burny hot bits to cool them down. My feet are a bit weird too, they go red, or purple, or one goes red and the other goes white, but when it happens to my feet it isn’t painful.

My GP and I went back and forth between Mast Cell Activation Syndrome (MCAS) and Raynaud’s Disease, both conditions in their own right, and also both quite common in combination with ME. I tried some medication for MCAS, a high dose antihistamine, but it didn’t help, which is what made us settle on Raynaud’s, but I think there may be a bit of both going on. I could try a blood pressure medication to help with Raynaud’s, but my GP doesn’t advise it, given the side effects, which would exacerbate my ME symptoms and make me feel worse in general.

However! I have been getting acupuncture treatments since the start of the year for migraines and general ME stuff. After it seemed like Raynaud’s was the most likely culprit for my hands, I asked my acupuncture man if he thought acupuncture could help. He went away and did some research, and found that there are specific acupuncture points for treating Raynaud’s, in the palms of my hands. So, as well as the needles in my feet, front of my hands and head, since September I’ve had one in each palm too. I have no idea how it works, I can’t even say if I really believe it works, because I don’t understand it, it doesn’t seem like it should work, but somehow it does seem to work. Maybe acupuncture is a placebo therapy, or maybe there really is something to it, but honestly, I don’t really care. Since we started using the Raynaud’s specific points, the burny hot and icy cold hands/fingers still happen, but not as frequently, and when it does happen, it doesn’t last as long, rarely for more than thirty minutes, whereas before, it would be almost every day, and for a few hours at a time. I didn’t make any other changes at this time, unless it’s a total coincidence, it surely must be the acupuncture.

Post Exertional Malaise (PEM), Post Exertional Neuroimmune Exhaustion (PENE) and Mental Health

*Apologies for all the upcoming acronyms, I know it makes for more difficult reading, especially for people with ME/brain fog. It certainly muddled my head while writing this section, but it was marginally easier/less muddled than writing the full names each time. 

If you’re a regular reader, or someone who has ME, you’ll know that the defining symptom of ME is the abnormal response to exertion. It’s not, as is often reported, fatigue. In fact, you don’t even need the symptom of fatigue to be diagnosed with ME.

This abnormal response to exertion is most often referred to as Post Exertional Malaise (PEM). Malaise however, which means “a general feeling of being under the weather”, is a dreadful word, and is so not descriptive of the symptom. I have always used the term PEM though, and I’ve mentioned it a lot in my blog, but I’m thinking of moving away from this. I don’t believe it’s very helpful. Along with the names Chronic Fatigue Syndrome (CFS) and the newer name that some organisations are trying to foist upon us, Systemic Exertion Intolerance Disease (SEID), I don’t think it does people with ME any favours. Rather, it may be aiding the misconceptions that exist about ME. So, I think I might start using the more accurate, Post Exertional Neuroimmune Exhaustion (PENE). And yes, I know pene is Spanish for penis –  that is unfortunate.

PENE is the term used in the International Consensus Criteria (ICC), the most thorough and up to date ME criteria, which I shared in Post Seven. Below I have shared the descriptions of both PEM and PENE. This was taken from a document created by the charity ME Advocacy, comparing ME as defined by the ICC, and as defined by the Institute of Medicine (IOM – but now known as the National Academy of Medicine).

The IOM criteria of ME, or as they call it, ME/CFS aka SEID, is lacking in comparison to the ICC. It’s vaguer, and as a result it will include people with illnesses that are not ME, and this is problematic. It risks watering down ME research if the people recruited to participate don’t all have ME. The ICC is simply more descriptive of the illness, and I believe it should be the only ME criteria – for diagnostic, educational and research purposes.

Post Exertional Malaise (PEM)

PEM is worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors that were normally tolerated before disease onset. Subjective reports of PEM and prolonged recovery are supported by objective evidence in the scientific literature, including failure to normally reproduce exercise test results (2 day cardiopulmonary exercise test) and impaired cognitive function after exertion. There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS (SEID) from other conditions.

Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS (SEID) should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.

Post Exertional Neuroimmune Exhaustion (PENE)

This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.

Characteristics are:

  1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
  2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
  3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
  4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
  5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level.

What I might do for now, so as not to confuse folks, is refer to it as PEM/PENE, and maybe one day I’ll drop the PEM completely.

I brought this up because my own PEM/PENE has been a lot worse this year. I wish I could learn from this, and I can to some extent, but due to the delayed onset, it’s incredibly difficult to measure. I can never quite know what causes my crashes. When I feel myself starting to crash, I always wonder what caused it – was it my shower the night before, my lack of sleep that night, or my GP appointment two days ago? There’s no way of knowing. I can repeat those activities, to try and find a pattern, but the results will vary. What makes it more complicated is that I often seem to have shorter term crashes going on within my longer term crashes – crashes upon crashes!

I’m still in a long term crash (maybe relapse is the better word here) from my Iceland trip last December. This means that I’ve manged far less activity this year than previous years. Last year, I could still go out for the occasional coffee, maybe once every two months – not anymore, the last time I went out for coffee was December last year. I can now only leave my home for medical and counselling appointments, and for very rare short outings with my mum, usually for a drive. All of these outings cause me to crash, but I have to weigh up the benefits. Having regular support from my GP and counsellor, and getting outside for fresh air and a change of scenery every few months is vital for my mental health.

While I’ve been in my Iceland relapse, I’ve also had a lot of other things going on, all of which have contributed to my decline this year. The summer heatwave and the many months I have had to dedicate to working on my PIP application and my ESA renewal (disability benefits) have been a huge factor. It’s been an emotionally difficult year too. There was that thing with the cat (see Post Twenty Nine). Also, in July this year some of my relatives from the States and Canada came to Scotland for a family reunion. I saw them all briefly, and it was lovely to see/meet them (three second cousins who I haven’t seen since 1988 – one of them was the first baby I ever held!), but it was also very difficult for me not being able to take part in the family dinners and day trips. While it always makes me feel sad, I usually handle these things ok. I know that life has to go on around me, I can’t ban everyone I know from living until/if I’m well enough to join in again, but this was a particularly difficult one. 

An inevitable consequence of my ME worsening this year, is that I’ve generally felt a lot more isolated. I haven’t been well enough to socialise and interact with people as much I would like, or need to. I do have a handful of people who, in lieu of seeing me in person (due to geography or lack of time), do keep in regular contact with me. These are the people who understand and accept my limitations and don’t expect more from me than I can offer. So many people have disappeared from my life since having ME, so the ones who have stuck around are invaluable to me. I still grieve for the people I’ve lost, and I try not to be angry with them, but I can’t help but feel hurt. Not everyone is built to handle chronic illness and disability. They can’t cope when their previously healthy friends suddenly have different abilities, needs and priorities, they don’t know how to deal with it, so they distance themselves from it. 

The other consequence of my continuing/worsening ME and the isolation, is the decline in my mental health, which I am still struggling with, both the depression and anxiety. At the moment I feel I can handle the depression slightly better than the anxiety. I am, at times, not all the time, able to distract myself when I’m feeling low in mood. But I find the anxiety is harder to ignore. The nervous dread that I feel, the panic and the constant feeling afraid, of everything and of nothing in particular, is crippling. I’ve said before that I liken this to the feeling I had when waking from a nightmare as a child. But now, it’s a permanent fixture within my life. I’m hoping that this will ease as/if I can gain more control of my life. I have some changes to make and things to do, all of which I will get into next year. 

I think that’s it

As far as I can remember, I think that’s us pretty much up to speed. What I haven’t covered in detail is my PIP application or my ESA renewal, and I also want to tell you about what’s going on in the wider world of ME, from the NICE guidelines review for the treatment of ME (The National Institute for Health and Care Excellence – they provide guidelines for the NHS), to my own personal advocacy efforts. But there’s so much to say that these really merit posts of their own, which I’ll hopefully get round to soon, ish. 

 

NEWS

The Sunday Times. How it feels to… be exhausted 24 hours a day.

https://www.thetimes.co.uk/article/how-it-feels-to-be-exhausted-24-hours-a-day-28cx59bn9

Simmaron Research. Immune Study Adds to Evidence Of Body-Wide Problems With Energy Production in Chronic Fatigue Syndrome (ME/CFS).

http://simmaronresearch.com/2018/11/immune-study-evidence-energy-production-chronic-fatigue-syndrome/

Simmaron Research. Could “Junk DNA” Be Causing Chronic Fatigue Syndrome / Myalgic Encephalomyelitis?

http://simmaronresearch.com/2018/11/junk-dna-causing-chronic-fatigue-syndrome-myalgic-encephalomyelitis/

Stonebird. Severe ME : What You Don’t Say, What You Don’t See.

http://stonebird.co.uk/WYC/index.html

Health Rising. Workwell’s Two-Day Exercise Tests and Breaking the Deconditioning Dilemma in Chronic Fatigue Syndrome (ME/CFS).

https://www.healthrising.org/blog/2018/11/19/workwell-cpet-deconditioning-dilemma-chronic-fatigue-syndrome-me-cfs/

Simmaron Research. Could Crippled Herpesviruses Be Contributing to Chronic Fatigue Syndrome (ME/CFS) and Other Diseases?

http://simmaronresearch.com/2018/11/crippled-herpesviruses-contributing-chronic-fatigue-syndrome-mecfs-diseases/

Health Rising. Anaerobic Thresholds, Fatty Acid Problems and Autophagy: Dr. Klimas’s Exercise Study.

https://www.healthrising.org/blog/2018/11/15/anaerobic-thresholds-fatty-acid-problems-and-autophagy-dr-klimass-exercise-study/

Health Rising. Free Six-Part Online ME/CFS / FM Video Series From the Bateman Horne Center Begins.

https://www.healthrising.org/blog/2018/11/09/online-me-cfs-fm-fibromyalgia-video-bateman-horne-center/

Health Rising. Are “Old” Muscles Holding People with Chronic Fatigue Syndrome (ME/CFS) Down? Plus Tompkins’ Team Promises New Insights.

https://www.healthrising.org/blog/2018/11/07/muscles-old-chronic-fatigue-syndrome-tompkins/https://www.healthrising.org/blog/2018/11/07/muscles-old-chronic-fatigue-syndrome-tompkins/

Bateman Horne Centre. Cutting Edge Technology for ME/CFS Biomarker Discovery.

https://batemanhornecenter.org/accelerating-research/

Not The Science Bit. The Triumph of Eminence-Based Medicine.

https://notthesciencebit.net/2018/11/03/the-triumph-of-eminence-based-medicine/

Health Rising. ME/CFS, Naviaux’s Cell Danger Response and a Nervous System Under Threat.

https://www.healthrising.org/blog/2018/10/29/me-cfs-naviaux-cell-danger-response-freezing-nervous-system-threat/

BBC News. ME and chronic fatigue: ‘Some doctors don’t believe you’re sick’.

https://www.bbc.co.uk/news/uk-wales-45954552

Health Rising. The Metabolic Trap Shines During the Symposium on the Molecular Basis of ME/CFS at Stanford.

https://www.healthrising.org/blog/2018/10/18/the-metabolic-trap-shines-during-the-symposium-on-the-molecular-basis-of-me-cfs-at-stanford/

Health Rising. GET Paper Withdrawal Shocks CBT/GET Proponents – Emboldens ME/CFS Advocates.

https://www.healthrising.org/blog/2018/10/20/get-paper-withdrawal-shocks-cbt-get-proponents-emboldens-me-cfs-advocates/

Sage Journals. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review.

https://journals.sagepub.com/doi/full/10.1177/2055102918805187

CNN. Indie pop sensation’s disease became his muse.

https://edition.cnn.com/2018/10/05/health/chronic-fatigue-stuart-murdoch-belle-sebastian-turning-points/index.html

Simmaron Research. Could the Brain’s Mast Cells Be Causing Chronic Fatigue Syndrome (ME/CFS)?

https://sable.madmimi.com/c/16005?id=2732257.9403.1.5b43278c3d7ba2fa12d3bcc50d542c6b

Health Rising. Invasion: The Source of the Neuroinflammation in Chronic Fatigue Syndrome?

https://www.healthrising.org/blog/2018/09/25/invasion-neuroinflammation-chronic-fatigue-syndrome/

Health Rising. Brain on Fire: Widespread Neuroinflammation Found in Chronic Fatigue Syndrome (ME/CFS).

https://www.healthrising.org/blog/2018/09/24/brain-fire-neuroinflammation-found-chronic-fatigue-syndrome-me-cfs/

 

Post Twenty Nine. How A Cat Taught Me Just How Bad My ME Is.

I learned a lesson recently about how much my illness limits what I’m capable of, and I learned it in the most painful way possible.

For the last couple of years I have thought about getting a cat. I love cats. I haven’t had one since Smokey, my family’s cat, who we’d had since she was a kitten, and died in December 1998, when I was eighteen. I’ve always expected that I would get another cat one day. The years that I lived in Edinburgh pre-ME I only lived in flats with no direct access to a garden, and I didn’t want an indoor cat, but since I moved back to Peebles, in a house with a garden, I began thinking again about getting a cat.

I’ve gone through the same pattern for the last couple of years. I would decide it was time to get a cat, I would search the local cat rescue websites, I’d fall for a particular cat and I’d get all excited. But then reality would kick in, and I would question how sensible it would be, given how incapacitated I am by my ME, and I live alone. I’d eventually decide against it, until the next time. This has been going on for at least two years.

Well, it turns out that all the reasons that had stopped me from getting a cat, were correct, and I discovered this in the most difficult way.

More recently, due to the isolation I live in, and how lonely it is, I began to focus on the company a cat would give me. So many people said it would be so good for me, that having a cat would be therapeutic, and I decided to trust that, and just do it.

A couple of weeks ago my mum took me to visit a local cat rescue centre. I told them that ideally I wanted an older cat, partly because it would likely be less active and just want to sleep and cuddle, and be as low maintenance as possible, and partly because I felt sorry for the older cats that no one else wanted. The first cat they introduced me to was fourteen years old, and had been at the shelter for over a year, longer than any of their other cats. That is what sold me, I felt so bad for her, being overlooked for over a year because of her age. She was really small and so pretty. She was also grey and white, the same as Smokey. Initially I had decided against getting a grey and white cat, because I didn’t want to feel like I was getting a Smokey replacement. But she was the best option of all the cats they had, and again, I felt so bad for her, I wanted to give her a lovely forever home for her old age. I told them she was the one, and we arranged for me and mum to collect her the following week.

The day after I met her I started to have doubts. The same thoughts that had stopped me from getting a cat previously were filling my head, and my gut was telling me not to go through with it, but I foolishly decided to ignore that. Everyone else was so sure this would be so good for me and my mental health, that I decided to just focus on the excitement of having a cat for company. The excitement was genuine, I really love cats, but so were the doubts. I felt regret almost immediately after my mum and I went to collect her.

She did not enjoy the car journey home, both puking and pooing in the cat carrier. When we arrived home and I opened the carrier she headed straight for the box I had prepared for her, with warm woollen blankets and a hole cut out the side, so she would have a safe place to be when she wanted to hide. She didn’t stay in the box for long, after a few minutes she ventured out and ate some biscuits, then she set about exploring my bedroom. I had been told that when re-homing a cat it’s best to keep them in one room for a while, to help them adjust, and she would let me know when she wanted to explore further. Well she let me know almost immediately. I was expecting her to stay in my bedroom for a few days at least, but she wanted out within a couple of hours. It was fascinating watching her explore, she was very thorough. First she had a wander around the bathroom, looking back at me every now and then, then she headed upstairs to my living room/kitchen. She did the cutest thing when she wanted to see something higher up, standing up on her back legs like a human. She gave herself, and me, quite a fright when she tried to jump up the defunct chimney and slid back down crashing onto the top of the fake wood burning stove sending candles and chimney dust everywhere. I quickly realised that this was a remarkably active senior cat, she was a kitten at heart, not an old lady.

I really enjoyed watching her investigate my home, and I loved that she was clearly becoming comfortable with me. I had been told that she had a tendency to swipe at people, which she did once, and there were a couple of hisses, but generally she was sweet and playful and she kept headbutting me in that lovely way that cats do when they want attention and head scratches. She had the loudest purr and the deepest meow I’ve ever heard, it was not a sound I was expecting to come out of such a dainty and feminine looking cat. One of the loveliest things about her was her desire to be near me, she followed me everywhere. But despite how sweet and lovable she was, I also felt weirdly scared, and really really anxious. I was feeling the enormity of this new responsibility that I had for a another living creature. I began to feel incredibly overwhelmed.

I need to rest, a lot. Most of my day is spent resting and moving as little as possible in order to preserve what little energy I have, so that I can do essential tasks like eat, brush my teeth, go to the toilet, take my medications and attend my medical and counselling appointments. But now I was constantly having to get up off the sofa to remove her from places she shouldn’t be, rescue her from places she got stuck and investigate loud noises coming from the other room, thinking I was going to find her injured and/or the room in chaos.

She slept for an hour or so in the evening, but she was awake all night. Awake and very energetic. Due to the noise she was making – crashes, bangs and wallops, and meowing very loudly, I barely slept either. Again I kept having to get out of bed to tend to her. She’d get herself stuck and meow until I rescued her, or she’d be bounding around the living room upstairs from my bedroom, and even with ear plugs in, I heard her almost every movement. She wasn’t being naughty, just very eager and excitable in her explorations. Perhaps naively, I hadn’t anticipated the exertion it would require from me. This constant having to get up and down to deal with her, which of course was on top of all the routine stuff involving feeding her, dealing with the litter tray (until I could let her go outside) and playing with her. It was too much physical activity for me.

In the morning, after practically no sleep, I really began questioning whether I had done the right thing. I did know that this additional activity required on my part would reduce as she settled down into a routine, began to sleep through the night and have the freedom to get outside. I also knew it would take time for her to settle, but I completely misjudged my ability to cope with it, well, my ME’s ability. I realised that I just would not be able to cope with the few weeks it would take her to settle. Sleep is never restorative for me, but getting almost no sleep has a massive impact on my body and symptoms over the following days. Given how dreadful I felt after that one night, I knew I couldn’t go on like that. I had made a mistake, and I began to think I should return her to the shelter.

I spoke to a few people about it, and most had very good arguments for keeping her, telling me that this settling in period would not last forever. But these people don’t have ME, they don’t know what it is like to (attempt to) function on an energy/activity level that has decreased to anywhere between 3-10%, occasionally creeping up to 15% on a “good” day. She was a lovely wee cat, and was not to blame at all, but I realised that if she stayed, I would crash, hard. I’m not back to my pre-Iceland level of ME, and I feel like I was only just beginning to recover from the ten weeks it took me to complete my PIP form and the summer heatwave. I simply cannot cope with another major crash.

There was also something that I just hadn’t considered at all. On less good days, sometimes even on normal days, I struggle with any movement within my vicinity. It’s why, when mum comes over, for example, I can’t cope with her knitting while we chat, or just while I rest, because the movement of her knitting gives me vertigo-like symptoms. On my worst days, actually, even on my normal days, I struggle to do things like wash my dishes, and sometimes I can’t even cope with my mum washing my dishes for me, because of the movement and the noise. It was the same with the cat. After my sleepless night, just the movement of her grooming herself, out the corner of my eye, made me feel lightheaded and dizzy. Also the smell of her cat food made me feel nauseous, and in such a small house, I could smell it from every room. I’ve never been bothered by the smell of cat food before, but my ME makes me hypersensitive to various things – medications, noise, light, temperature, alcohol, food, and now it turns out, smells.

It was the most difficult and painful decision, but after long talks with my mum, sisters and the shelter, I decided it was best to return her. I could barely talk while I was on the phone to the shelter, they were nice about it, but I felt terrible, and was sobbing throughout the call. I was sure they were going to add me to some international cat re-homing blacklist, and maybe they have. I donated all the cat food and litter I had bought to the shelter, not that this helped to ease my conscience at all.

My sister came round with my niece and they took her back that afternoon. Unfortunately it was another puke and poo inducing car journey for her, and I hate that I put her through that. I felt like a monster as I put her back in her carrier, which, from her protestations, she clearly remembered from the previous day. I also hate that after a year in the shelter, I gave her a taste of a ‘normal’ life, she seemed happy in my home, then I took it away from her. I currently feel like the worst person in the world.

I hope that by returning her after twenty four hours, as opposed to waiting a few weeks then returning her, she won’t remember me. Cats first become attached to places, as opposed to people, so I know/hope she won’t have become attached to me, so won’t miss me. It’s not like she was aware that I had intended to keep her forever, for all she knew it was only ever going to be a day/overnight trip, like an extended vet visit, but with no vet, a chimney to explore and lots of toys. I really miss her, she was so sweet and was great and entertaining company. She will make a lovely pet for someone, if they can just see past her age.

Maybe if I already had a cat before getting ME, and it was with me from the beginning of my illness, I would be able to cope with it far better. But I cannot cope with the settling in period, and there’s no way around that. I so wish I had trusted my instincts, and not done it. I let myself get swayed by the opinions of other people. I guess the one good thing about this whole thing is that I do know now for sure that I was right and that I can trust my instincts when it comes to what I can handle. But I wish it hadn’t come at the expense of this wee cat. I let her down, and I let the people at the shelter down, they were so happy to see her be re-homed. I feel absolutely sick about what I put her through. I also let myself fall for this cat, and now I don’t have her. My house feels empty, and so do I.

I might try again one day, but only if my ME has improved significantly, and only once I’m living in a larger house with a spare bedroom that can contain the cat during the settling in period. I will not put another cat, or me, through this again, not unless I am absolutely 100% sure about it. After my sleepless night with the cat here, and twenty four hours without eating due to my anxiety, I slept twelve hours the following night. I felt relieved the next day, but also really sad, because I missed her, I still do. I wanted to keep her so much. Even if I’m well enough one day to try again, it won’t be the same cat, and she really was something very special.

This has been yet another reminder of just how unwell I am and how much ME is depriving me of. Usually when I test the waters and overdo it, the impact is only felt by me, but this time it wasn’t just me who was affected, an innocent cat was too, and the guilt I feel for that is enormous.

Do you want a cat?

If anyone reading this (who can easily get to the Edinburgh area) has been thinking of re-homing a rescue cat, and likes the sound of this wee cat, please get in contact, which you can do here. I can send you a photo and let you know where you can find her. But please be sure you can absolutely give her a home for life. Please be a better cat mum or dad than I am.

Also, please, if your first instinct is to try and give me after-the-fact advice on how I should have handled it, please don’t, that is not helpful. It’s done, I made the right decision, I feel utterly crap about it, but I don’t regret it.

 

Update! After I returned her, the shelter made her their ‘featured cat’ on their website. This extra exposure worked and she has now found her new home!

 

NEWS

Third Force News. If the government won’t take ME seriously who will?

http://thirdforcenews.org.uk/blogs/if-the-government-wont-take-me-seriously-who-will

BBC News. ‘My robot makes me feel like I haven’t been forgotten’

https://www.bbc.co.uk/news/business-45332710

Health Rising. “The Great Chronic Fatigue Syndrome Community Gene Study” Breaks New Ground

https://www.healthrising.org/blog/2018/08/31/the-great-chronic-fatigue-syndrome-community-gene-breaks-new-ground/

Simmaron Research. Autoimmune Model Proposes Chronic Fatigue Syndrome (ME/CFS) Begins in the Gut

https://sable.madmimi.com/c/16005?id=2664349.9251.1.afed89af2c5944b820ed11f96d038343

Health Rising. Mission Accomplished! (????) Feds Terminate the Federal Advisory Committee on Chronic Fatigue Syndrome (ME/CFS)

https://www.healthrising.org/blog/2018/09/09/cfsac-termination-chronic-fatigue-syndrome/

CommonSpace. SNP MP brands UK Government ‘reckless and heartless’ as figures reveal nearly £200m spent fighting disability benefit appeals

https://www.commonspace.scot/articles/13186/snp-mp-brands-uk-government-reckless-and-heartless-figures-reveal-nearly-200m-spent

Chronic Illness Inclusion Project. It’s not ME, it’s you – can the chronically ill embrace the social model?

https://inclusionproject.org.uk/social-model/its-not-me-its-you/

Northwest Functional Neurology. Netflix “Afflicted” Ep. 2 Doctor Speaks Out

http://northwestfunctionalneurology.com/netflix-afflicted-doctor-speaks-out/

The Guardian. Sorry, Netflix: we don’t need another freak show

https://www.theguardian.com/society/commentisfree/2018/sep/18/sorry-netflix-we-dont-need-another-freak-show

Medium. Open Letter to Netflix Regarding the “Afflicted” Docuseries 

https://medium.com/@afflicted/open-letter-to-netflix-regarding-the-afflicted-docuseries-d2b5263c9eb6

Post Twenty Eight. Disbelief About The ‘Afflicted’.

When you have a chronic illness, that’s largely invisible (both the symptoms and the people who have it), difficult to diagnose, not fully understood by science and surrounded by misunderstandings and misinformation about what it actually is and how it affects people, you encounter a lot of disbelief. From friends, family, employers, doctors, the government, the media, and the general public. People with ME seem to have drawn the short straw. While definitely not the only invisible illness to be on the receiving end of such disbelief, ME is plagued by misconceptions, and as a group we are hugely marginalised and stigmatised.

I’m lucky, my family believe me. Isn’t that shocking? That I consider myself lucky because my family believe that the illness I was diagnosed with is real?! Many people are not so lucky. My friends, the ones who remain in contact, believe me (although there was the odd ‘yuppie flu’ comment when I first told people), the ones who have drifted away, I guess they don’t? While I was still working, my employer believed me. The government simultaneously believe me and don’t believe me. They believed me when I applied for ESA (Employment Support Allowance) in the summer of 2015, but they didn’t believe me a couple of months later when I applied for PIP (Personal Independent Payments), for which I am now re-applying – hopefully they’ll believe me this time. Most doctors I’ve encountered haven’t believed me, it took me I think, ten different GP’s before I found my current GP – who is great, and believes me. As for consultants, very strangely, the specialists I saw while I still lived in Edinburgh, on the whole did not believe me, but the specialists I’ve seen in the Borders, on the whole, while not particularly knowledgeable, have believed me. Note, these are not ME specialists – there’s no such thing, not around here anyway  – these are the specialists I’ve seen for individual symptoms (gynaecology, urology, neurology and ENT). As for the media, it’s a mixed bag, I have seen a small handful of decently researched, accurate and sympathetic articles in recent months. Some articles contain some truth, but also a lot of misinformation, which really just cancels out all of the good stuff. Then there are the articles that are downright inaccurate, offensive and full of lies and outdated information. I don’t have much interaction with the general public due to being mainly house bound, but I do see their comments on the internet, and that is what this post is mainly about.

I have seen few illnesses be on the receiving end of so much vitriol, disbelief and mockery as I have ME. Every online article about ME will have comments from people who who don’t believe ME is real. The internet is full of trolls, I know that, and I know I shouldn’t take notice. But it’s hard. While I don’t feel I am defined solely by my illness, ME is certainly a very important, though unwelcome, aspect of my life. In a way, it does define my life and my ability to live it. Every single thing I do, every action, every activity, is determined by my ME, I cannot escape it, ever. Knowing that there are so many people out there who deny my existence and think it’s an excuse for laziness, it’s beyond hurtful. I’m suffering enough, I could do without having to use energy to defend myself. If these people were only found in the comments sections on the internet it wouldn’t matter so much. But these people are also doctors who don’t take their patients seriously, government workers who decide whether someone they’ve never met is eligible for disability benefits or not, MP’s who won’t stand up for their constituents and demand sufficient funding for biomedical research (my MP said it would be ‘inappropriate’ for him to interfere). Having a disabling chronic multi-system neuro-immune illness is bad enough, but because the illness I have is ME, I also have this additional layer of distress to cope with. Something that people with other illnesses don’t have. I wish I had one of those illnesses.

I had a conversation with someone on Twitter a few days ago, she has MS but had initially been misdiagnosed with ME for eight years…

“I have now been diagnosed with MS but was told I had ME for 8 years before…ME is a crappy illness as the stigma still seems to be there. I feel lucky as getting an MS diagnosis has made things easier in the medical world. In the past I’d been told “to pull my socks up” and also asked if I could give reasons for not wanting to get better.”

MS actually used to be where ME is today, in terms of perception, but then the CAT scan was invented, and suddenly doctors could ‘see’ it, and they began to take the illness, and the people who have it, seriously. We can’t see ME yet, therefore, for many, it must be “all in our heads”.

The disbelief surrounding ME is the reason why we have no treatments, no cure and no support. The government won’t invest in biomedical research for an illness, that as far as they’re concerned, is ‘all in our heads’. They haven’t learned from experience (MS), and they don’t appear to care that current research and evidence proves definitively that ME is not a psychiatric condition. Why don’t they care? Why are we so unimportant? Why is my life not worthy of saving? For me, the disbelief of the illness that has stolen my life from me, feels like the worst form of rejection a person can experience. I feel like I simply don’t matter. And it’s not just me, there are approximately 21,000 people with ME in Scotland, 250,000 in the UK, and 17 million worldwide.

When you are diagnosed with ME you are on your own – no treatment plans, no specialists and no guidance. We are diagnosed then sent away to fend for ourselves. I feel like we are soldiers that have been sent out to the battlefield with no training, lost, scared and alone. So we try to move forward, but without knowing what to do for the best. Do we rest? Do we exercise? Do we monitor our heart rates? Do we change our diet? What do we do to get better? So we immerse ourselves in research, and we realise that we have to become our own experts, no one else is going to help us here. The more we dig, the more we realise that we don’t just have an illness to deal with, we have a world full of people who are out to get us, and who are happy to let us fall down and die, and they’ll laugh as we do.

I have been collecting internet comments about ME, and some about disability in general, by the way of screenshots. They are all from random members of the public, but many people with ME do hear this crap from their doctors, their employers, family and friends, I’m in many ME support groups and forums, I hear their stories. When I tell people about the level of disbelief thrown in our direction I am, funnily enough, often disbelieved. I expect that’s because the people I’m telling, are decent and have brains. They do believe in ME and they can’t understand why anyone wouldn’t believe, I mean, the evidence is kind of undeniable, anyway, here’s some proof, and not that they deserve it, but I’ve hidden their names/usernames for their anonymity.

This slideshow requires JavaScript.

Aren’t people delightful!

The ‘image’ of ME has moved forward somewhat recently. Jennifer Brea’s film Unrest, the work of ME charities, the advocacy group MEAction and the MillionsMissing protests, and people like me who are blogging about our own experiences, we all help to educate people about ME. Unfortunately, something has come along recently that has the power to undo the progress we have made. A documentary series, created by DocShop Productions for Netflix, called “Afflicted”.

Ok, where to start. This is what was promised during the casting process for Afflicted…

“I am working on a documentary series for Netflix that explores the experiences of individuals suffering from chronic or unexplained illnesses. I’m looking for people willing to share their stories on-camera as part of the series. Our intention is to look at these experiences through a compassionate lens and give voice to those who are struggling for answers and acceptance.”

I should make it clear that I have not, and will not watch the series, so this is not a review. I started to, I made it ten minutes, but I stopped. I didn’t want to add to the viewing figures, and I knew, based on what I’d heard from the participants, that it would upset me too much. The day it aired on Netflix I saw one of the participants, Jamison, who has ME, voicing his disappointment, he stated that he felt he had been misled. I have followed his blog for a while, and I have no reason to disbelieve what he, or the other participants, have shared about their experience. All my knowledge about the series comes directly from the people who are in it and what I have heard from other viewers.

So, the participants of the series believed they were taking part in a project that would show their lives and struggles with chronic illness through a “compassionate lens”. Unfortunately, that is not what was portrayed in the final product. The producers went in a different direction, they deliberately went with a narrative that would allow viewers to believe the participants were neurotic hypochondriacs, suffering from psychiatric disorders, and not the physical illnesses that they were diagnosed with. They wanted the audience to question their mental health and doubt the validity of these people’s illnesses, and it worked. Here is a selection of what the general public think about Afflicted, and the people in it…

This slideshow requires JavaScript.

The people responsible for Afflicted turned their subjects into a joke. They had the material to create a sympathetic and factual documentary, but they deliberately omitted this footage, to create what ended up being “reality TV”. They took vulnerable and desperately ill people and turned them into a sideshow act reminiscent of 19th Century freak shows. I thought we were past disabled people being exhibited to the public as ‘entertainment’, but apparently not. Afflicted wanted the viewers to question if these people were suffering from psychosomatic illnesses, but they didn’t share with the audience any of the medical information that was provided (by the participants) that would allow them to answer those questions accurately. They held back on the facts and the science while leading viewers to believe they had all the information they needed to make informed decisions about these people, the decisions being, “these people have mental problems”. They deliberately played up to the doubt that people already hold about invisible illnesses. Please note, there is no shame whatsoever in having ‘mental problems’, I have them myself, it’s not uncommon for chronic illness to affect a person’s mental health, but these people’s primary conditions are not psychiatric in origin.

The footage and the interviews with the participants and their families were twisted and manipulated. They sneakily edited, chopped up and spliced together their dialogue, to have them say things that in reality, they did not say, they basically created a work of fiction, but presented it as fact. The production of this series was so dishonest, they fed lies to their audience, knowing they would lap it up. They told viewers that they had offered one of the women a treatment worth $25,000, and she had turned it down, for no good reason. This led people to think she didn’t want to get better, that she was revelling in her illness and simply loving the attention. In actual fact, the series didn’t include the bit where she sought advice from her medical doctors, who told her that treatment would actually be dangerous for her, and her specific condition, and they advised she not go through with it, that is why she turned it down.

Viewers were led to believe that these people have spent an inordinate amount of time and money pursuing alternative treatments, for which they have received a lot of scrutiny, you know, given they had apparently turned down actual medical treatment. But the participant’s own scepticism of some of these treatments, which were at the suggestion of the production company, was edited out. Many of these people have concrete diagnoses and test results, but these were also excluded. So much of the criticism they have recived since Afflicted aired has been based on the narrative that they, the audience, were fed, that their problems are “all in their heads”, but they wouldn’t accept that they needed mental help. What wasn’t told, was that most of them have been referred to psychiatrists or psychologists at some point since they’ve been ill, and none of them have been told that their physical symptoms have a psychiatric cause. Many of them have even, in desperation, tried psychiatric interventions/medications, which did not work, they are still ill. They even had to undergo (and pass) a psychiatric evaluation in order to participate in the show was, which of course was conveniently left out.

During the filming process the crew attended a ME symposium and interviewed leading ME scientists, but these were omitted from the final product. Rather than have their actual doctors on screen, they had a random psychiatrist, who had never met any of these people, and had no knowledge of, or expertise in their actual diagnosis’s. He was there purely to speculate about what was making them so unwell and aid the sensationalist narrative.

“They don’t want to be sick, but in an attempt to solve the problem, they’ve taken on the sick role and they’ve crowded out everything else in their life.” Something that psychiatrist man said.

This series has done unspeakable damage to the chronic illness community, not to mention the people who actually participated in the series, who have since been subject to abuse, harassment and even death threats. People with invisible illnesses already face so much judgement and disbelief, we could do without the media aiding this idea that we only ‘think’ we are unwell but actually have psychiatric problems. Would we ever see a ‘documentary’ about cancer, in which the audience is encouraged to question whether they are really ill or not? Of course not, people would be outraged if that happened. Afflicted was a sick game, it was entertainment for able-bodied/healthy people to guess what the ‘freaks’ ailments were, and they had a lot of fun doing so.

“I think that they seem to enjoy being cared for, and doted on. It gives them purpose and meaning. Folks love to play victim.” Random review from some idiot.

I’ve seen many reviews go along the same lines as this. This couldn’t be further from the truth. I was healthy, active, fit and independent, I had a great job, was travelling and life was good. Now, I’m a thirty eight year old who is dependant on her mother. My mum could tell you how much I dislike asking for and accepting help (although I am of course grateful). When I tell her that I worry about being a burden, she tells me, that if anything, I don’t accept enough help. How can anyone think that any of us enjoy this life? I get no sense of purpose or meaning from having ME, what I do about it gives me a sense of purpose (this blog), but I absolutely hate, with a passion, being ‘cared for’. And I am no victim, thank you very much!

Since Afflicted has aired, some of the participants have written about their experience, I have shared these at the end of the post. Please read their stories, especially if you have watched it, they deserve to have their truth heard.

This whole thing with Afflicted had taught me a valuable lesson. I was recently approached myself to potentially take part in a TV documentary. In May I was contacted by someone who said he worked at Wild Pictures, a UK based production company, he told me he had read my blog and wanted to speak to me regarding an upcoming documentary they were making for the BBC. I happened to have written about the subject matter (assisted/accompanied suicide and my Dignitas membership) in my blog. We corresponded via email for a bit and were arranging a time have a Skype chat, I gave him some days in the following week I could speak, but I never heard from him again. I’ve emailed a couple of times since and haven’t heard back, so I guess it’s not happening.

It’s fine if they don’t want me and my story as part of the documentary, it would have been a massive, and scary, undertaking for me, I don’t even like having my photo taken. It will also be better for my health to not take part. I thought of it however as an opportunity to raise awareness about my ME, on a massive scale, given it would be on the 9pm slot on BBC One. I imagined people watching, seeing a woman with ME, and hearing that it prompted her to join Dignitas, “wow”, they might think, “ME is obviously a more serious illness than I realised”. So I was disappointed when I realised it wouldn’t happen, a tad relieved too, but mainly disappointed.

I was also upset by this researcher’s lack of consideration, and manners. I’ve never done TV stuff before, so maybe this is normal behaviour, but it worries me that TV researchers feel it’s ok to seek out vulnerable people, who they know to be very unwell, let them feel that they are being heard, offer them an opportunity, and then just drop them, with no explanation. He could at least have had the consideration to tell me I wasn’t needed, rather than raise my hopes and then just cut off communication.

It has also crossed my mind that this could have been a scam. In the original email I received, via my blog, the researcher had spelled the presenters name (Miriam Margolyes) incorrectly, twice, something that my sister noticed and thought was a bit of a red flag. So she may have been right. But shortly after this I also received an email from Dignitas themselves (as a member I’m on their mailing list), they had also been contacted by Wild Pictures looking for people to contribute to the project. That made me think it was legit, but honestly I don’t know.

Given how the participants were misrepresented on Afflicted, I think I may have had a lucky escape here. I am happy to speak about my feelings on this subject to anyone who wants to learn, but I’m not willing to be messed around and misled and I am not willing to let anyone waste my time or my limited energy. How the researchers treat potential interviewees is likely a reflection of how they treat the people who are selected to take part, and it’s not something I want to put myself through. I don’t think I’d cope well with having no control over the final edit, or how I would be portrayed. If they misled me as the Afflicted subjects were, and I was then subject to malicious internet comments, I would be devastated, and I’m sure it would be pretty damaging to my mental health. I now realise that I cannot trust anyone to tell my story, but me.

Please read the Afflicted participants stories for yourselves.

“We were all told that we would be participating in a project that would show our lives and our struggles with illness through a “compassionate lens.” We participated because our diagnoses are misunderstood and stigmatized. We thought that revealing some of the most intimate moments of our lives would lead to greater public understanding. We hoped that with it might come investment in research to find biomarkers and better treatments. We never fathomed that we were participating in a project that would instead expose us and our communities to further ridicule and disbelief.”

The Truth Behind Netflix’s ‘Afflicted’ – A group blog post by some of the subjects of Afflicted

Their individual stories. 

Jamison

Jesse and Bekah

Nick and Bekah

Jake

Pilar

Jill

Janine

What other people are saying about Afflicted. (I will update this as new articles are published)

The Mighty. Why the Netflix Docuseries ‘Afflicted’ Is Harmful for the Chronic Illness Community.

Patheos. 3 Ways Netflix’s “Afflicted” Hurts People with Chronic Illness.

MEAction. Netflix’s docuseries “Afflicted” exploits and stigmatizes chronic illness.

After M.E. After The Afflicted Freak Show.

Consumer News. Netflix says it won’t remove documentary about chronically ill that participants say led to cyber-bullying.

Nylon. The Cast Of ‘Afflicted’ On Netflix’s Misrepresentation Of Chronic Illnesses.

The Hollywood Reporter. ‘Afflicted’ Executive Producer Responds to Controversy, Protest Letter Signed by Lena Dunham, Monica Lewinsky.

 

NEWS 

Health Rising. The Cortene Chronic Fatigue Syndrome (ME/CFS) Drug Trial Begins.

https://www.healthrising.org/blog/2018/07/14/cortene-chronic-fatigue-syndrome-me-cfs-drug-trial-begins/

ME/CFS Research Review. The microbiome hypothesis: Lipkin’s collaborative, part 1.

https://mecfsresearchreview.me/2018/07/17/the-microbiome-hypothesis-dr-ian-lipkins-collaborative-part-1/

ME/CFS Research Review. The heart of ME/CFS? Lipkin’s Collaborative probes the impact of exertion, part 2.

https://mecfsresearchreview.me/2018/08/14/the-heart-of-me-cfs-lipkins-collaborative-probes-the-impact-of-exertion/

Stat. The medical community is changing its mind on chronic fatigue syndrome. Why aren’t insurers?

https://www.statnews.com/2018/07/19/chronic-fatigue-syndrome-insurers-disability/

Belfast Telegraph. Doctors ‘do more harm than good’ sending ME patients to gym.

https://amp.belfasttelegraph.co.uk/news/health/doctors-do-more-harm-than-good-sending-me-patients-to-gym-37129397.html?__twitter_impression=true

Nature. Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics.

https://www.nature.com/articles/s41598-018-28477-9

Sci-Hub. Are ME/CFS Patient Organizations Militant? Patient Protest in a Medical Controversy.

http://sci-hub.tw/10.1007/s11673-018-9866-5http://sci-hub.tw/10.1007/s11673-018-9866-5

Health Rising. New Harvard Chronic Fatigue Syndrome (ME/CFS) Research Center Fulfills Crucial Need.

https://www.healthrising.org/blog/2018/07/08/new-harvard-chronic-fatigue-syndrome-me-cfs-research-center-fulfills-crucial-need/

ScienceDaily. Insights from metabolites get us closer to a test for chronic fatigue syndrome

https://www.sciencedaily.com/releases/2018/07/180709120146.htm

MEAction. Denmark has some recommendations for ME…and they’re pretty awful.

https://www.meaction.net/2018/07/09/denmark-has-some-new-recommendations-for-me-and-its-pretty-awful/

Bateman Horne Centre. New Insights into Exercise Intolerance and Medication.

http://batemanhornecenter.org/systrom_cpetresearch/

HuffPost. Having ME Is Like Being Permanently Encased In A Suit Of Armour.

https://www.huffingtonpost.co.uk/entry/myalgic-encephalomyelitis-how-it-feels_uk_5b61badbe4b0fd5c73d524cc

InsideSources. The Monster Disease Medical Schools Don’t Mention.

https://www.insidesources.com/monster-disease-medical-schools-dont-mention/

Simmaron Research. System Reset? Study Suggests Pro-Inflammatory / Autoimmune Reset Occurred in Chronic Fatigue Syndrome (ME/CFS).

http://simmaronresearch.com/2018/08/system-reset-chronic-fatigue-syndrome-mecfs/

HuffPost. It Seems Impossible That People Don’t Believe Having ME Is A Serious Illness.

https://www.huffingtonpost.co.uk/entry/myalgic-encephalomyelitis-chronic-fatigue-syndrom_uk_5b6ac35ee4b0fd5c73df30a9

CNN. Millions suffer from an invisible disease: My ME/CFS story.

https://edition.cnn.com/2018/08/08/health/iyw-ryan-me-cfs-story/index.html

Health Rising. The RCCX Hypothesis: Could It Help Explain Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia and other Diseases?

https://www.healthrising.org/blog/2018/08/09/rccx-chronic-fatigue-fibromyalgia-eds-pots/

Disability News Service. MPs have won praise after calling on the government to ensure disabled people finally secure equality in the protection they are offered by hate crime laws.

https://www.disabilitynewsservice.com/mps-win-praise-for-online-abuse-proposals/

The Pool. The activist helping remove the stigma surrounding wheelchair users who can walk.

https://www.the-pool.com/news-views/latest-news/2018/33/youtuber-annie-segarra-is-helping-remove-the-stigma-surrounding-wheelchair-users-who-can-walk

Questioning Answers. On the question of suicide risk and chronic fatigue syndrome / myalgic encephalomyelitis continued.

https://questioning-answers.blogspot.com/2018/08/on-question-of-suicide-risk-and-MECFS-continued.html

ProHealth. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-Metabolic Disease Or Disturbed Homeostasis? Study proposes that stimulation of hypothalamic mast cells activates microglia leading to focal inflammation in the brain.

https://www.prohealth.com/library/myalgic-encephalomyelitis-chronic-fatigue-syndrome-metabolic-disease-disturbed-homeostasis-84606

The Mirror. ‘I can barely walk and I’m bed-bound 23 hours a day – M.E. nearly killed me’.

https://www.mirror.co.uk/news/real-life-stories/chronic-fatigue-syndrome-left-bedbound-13091318

The Canary. The UK’s General Medical Council just threw 250,000 disabled people under a bus.

https://www.thecanary.co/opinion/2018/08/22/the-uks-general-medical-council-just-threw-250000-disabled-people-under-a-bus/

ME/CFS Research Review. Significant association of DNA variants with self-reported ME/CFS. 

https://mecfsresearchreview.me/2018/08/28/significant-association-of-dna-variants-with-self-reported-me-cfs/

Welfare Weekly. Scottish government seek ‘anti-terror’ powers to spy on benefit claimants. The powers are typically reserved for protecting the public against terrorism and serious crime.

https://welfareweekly.com/scottish-government-seeks-anti-terror-powers-to-spy-on-benefit-claimants/

TheMindMap. Belle and Sebastian – Going Through The Emotions. Interview with Stuart Murdoch. 

https://themindmap.co.uk/interviews/belle-and-sebastian-going-through-the-emotions/

ABC. ‘Your disease is real’: Breakthrough in diagnosis of chronic fatigue syndrome.

http://www.abc.net.au/triplej/programs/hack/breakthrough-in-diagnosis-of-chronic-fatigue-syndrome/10188210

Post Twenty Seven. No, I’m Not Tired.

The ME Association was recently asked by the media to compile a piece describing the difference between having ME and just feeling tired all the time. Given the frustratingly common misconception that ME is ‘feeling tired’, this of course resulted in a lively discussion on their Facebook page, and it prompted me to want to write more about it. I’ve lost count of how many times I’ve written in my blog that ME is not ‘feeling tired’, yet some people still believe this to be the case.

I’ve had ME since 2014, and I had thirty four healthy years before I had ME. During those thirty four years, sometimes I felt tired, sometimes I felt absolutely shattered, and I remember what it feels like. I think people forget this, that I haven’t always had ME, that I used to be healthy, and like everyone, I experienced feeling tired from time to time. I know, with absolute certainty, that what I feel now, is not the same. My pre-ME tiredness was usually a result of a really busy and demanding day, a bout of insomnia, after a late night out with little sleep, or jet lag. I would feel sleepy, I would yawn, sometimes I would struggle to keep my eyes open, I’d find myself dropping off on the bus home from work, waking up every time my head fell forward like a nodding dog.

Since having ME, I don’t yawn anymore than I used to, and I rarely feel so tired that I can’t keep my eyes open. I actually find myself missing that feeling of being tired after a really busy and productive day. That wonderful and satisfying feeling of falling into a cosy bed, finally being able to lie down, sleep and recharge. I don’t have that anymore, because ME is not synonymous with sleeping. When I go to bed I simply hope that I’ll actually get some sleep, and that it won’t be too disturbed, I know it won’t be quality sleep, and I know that I won’t wake up feeling refreshed.

Being tired all the time is rough. But, despite how tired (healthy) people get, they can still function, they can recharge their batteries through sleep, they can wake up feeling refreshed, and while they might still feel tired, or groggy, they are physically able to do their day all over again. When I felt tired as a healthy person, I could always push through it too. I could give myself a temporary boost with caffeine, a splash of cold water on my face, I could take a catnap if I had the time, on a night out a shot of tequila worked wonders at waking me up! Tiredness never prevented me from being able to work, or being able to wash myself, or from socialising, or doing my grocery shopping or household tasks, or anything I needed to do in order to live a full, happy and ‘normal’ life. Sometimes motivation and laziness would prevent me from doing some of those household tasks in a timely manner, but never tiredness.

With ME, I do get exhausted, but it’s unlike anything I felt before I had ME. It’s not an exhaustion that makes me yawn, or feel sleepy, it’s more like my body is shutting down, and I feel it with everything I do. The ‘tiredness’ that people think I have, is actually a pathological inability to produce energy on demand at a cellular level. We know this to be true, research has found immune cells taken from the blood of people with ME show clear signs of low energy production. This manifests as a severe lack of strength and stamina, an extreme physical and mental weakness. It’s my muscles, my limbs and my brain, my entire body, not being able to summon the energy I need to complete normal everyday tasks. It means that everything I do, and I mean quite literally EVERY SINGLE THING requires so much more effort than it did before ME – everything I do just sucks all of the energy out of me. Every movement that my body makes, every word that I speak, every thought that I think – my body uses more energy to achieve just a fraction of these activities than a healthy body does, and my body has less energy to begin with. While a healthy person may need to run a marathon to feel like this, I just need to be alive.

This is how I try to explain it to a healthy person. Think about how your body felt after the hardest most physically draining physical activity you’ve ever done, whether an exercise class or, like I say above, a marathon – my body can feel like that after having a bath, or attending a GP appointment, or washing my dishes. Think about how fried your brain felt after working on your university dissertation nights on end, or your tax return, or a really demanding week at work – mine can feel like that after reading one short news article, or writing one email, or replying to a text message. Some days are easier than others, some days I can barely function, I can’t walk, or use my hands, or watch TV, but other days I can cook for myself and write this blog. All the things that I could do pre-ME, that were once so easy, that I could do without a second thought, are now mammoth feats of endurance.

These days I spend roughly fourteen hours per day in bed, and the other ten on the sofa. When I’m on the sofa, I usually have my phone on the coffee table within reaching distance. Sometimes, when I get a text or whatever, I reach out to pick it up, but my arm doesn’t make it and it drops down to the ground, just dangling off the edge of my sofa with my hand brushing the floor, like a rag doll. I can be lying in bed in the morning and someone knocks on my door, but I don’t have the strength to lift myself out of bed, it’s like I’m paralysed, so I have no choice but to lie there and ignore them, feeling incredibly rude. I get an email, I can read it over and over, but I can’t process or absorb the content, it feels like my brain is shutting down. When I do eventually manage to understand it, whether minutes, hours or days later, and I want to reply, as long as I have the physical strength required, it’s possible I won’t have the brain power to form sentences, I can try, but I’ll spell everything wrong, I’ll use the wrong words, I’ll miss words out, it’s like I have a temporary dyslexia.

When you have ME you begin to realise just how much energy is required to do, well, everything. To be be able to do the few things I can do, I have to conserve energy. Everything we do uses energy. Having a conversation, even having someone in the same room as me, without any talking, uses energy, and when I don’t have enough energy, it’s excruciating. I can be at home by myself, no visitors, no music, no TV, but just the noise of life going on outside, requires my body to use energy. The sound of children playing (one of the neighbour kids has a pogo stick), dogs barking (one of my neighbours has what I think is the worlds most vocal dog), the sound of distant traffic, birds singing, rain falling, wind howling… this can all be too much for me. When my body doesn’t have energy to process this noise, it’s unbearable, and often triggers a migraine and/or vertigo-like symptoms. This is why I sleep with ear plugs in, and the rest of the time, unless I have a visitor, I wear noise cancelling headphones. This reduces the discomfort and worsening symptoms that comes from sensory overload, but it adds to the isolation and loneliness, blocking myself off from the sounds of the world going on around me.

There are no guarantees, but resting and pacing myself are the only tools I have at my disposal in order to manage my illness. But even these don’t always work. I can be doing everything right, following the rules, not over-exerting myself, and I’ll still crash. Or I can one day do too much, and not crash. There’s no rhyme nor reason to this illness. These crashes, or payback, as I often call it, is how my body responds to over-exertion, and when I over-exert myself, I will suffer afterwards, not by feeling tired, but with a worsening of my symptoms. This is the defining symptom of ME, this abnormal response to exertion. Exertion can be in the form of physical, emotional or mental activity. Environmental factors play a part too, for example, the UK is currently experiencing a heatwave, and this has caused my symptoms to worsen.

When I’m not in a crash, when it’s a ‘normal’ ME day, I still feel ill. I never feel ‘well’, I haven’t felt well since early/mid 2014. I might look well, you might have seen me sometime in the last four years and thought ‘she looks well’, you’d be wrong. In the absolute simplest terms I can think of, I basically feel like I have fluctuating levels of the flu, ALL THE TIME. And in a crash, those flu-like symptoms worsen, considerably, combined with a multitude of other symptoms. Everyone with ME has a unique experience of the illness, we all share the abnormal response to exertion, but we have different baselines (the level of activity we can manage without a crash) and different symptoms. For me, ME is mainly about a lack of stamina and physical strength and feeling slowed down, and heavy, like my bones are made of lead. Pain – head, migraine, throat, lower abdomen/pelvic, limbs, muscles, joints and skin. Also cognitive dysfunction/brain fog. I experience these, on top of my other symptoms, in various levels of severity, EVERY SINGLE DAY.

“This illness is to fatigue as a nuclear bomb is to a match”. Laura Hillenbrand, author of Unbroken and Sea Biscuit

A few doctors who have ME were recently interviewed for an article in Medscape, when asked what he [Mark Vink, MD] would like other physicians to know about ME, Vink responded “…that this is a debilitating neuroimmune disease, which has got nothing to do with being tired.”

Having ME is not remotely like feeling tired, it’s worlds away from feeling tired, the word ‘tired’ doesn’t even belong in the conversation and it should never have been added to the conversation (the name Chronic Fatigue Syndrome is to blame for that I feel). This illness is like nothing I ever experienced before I had ME, and I have suffered with insomnia for years (long before I got ME), regularly going to work on only 3hrs sleep for days/weeks at a time. That’s how I knew, at the beginning of my illness, that something was seriously wrong with me, because it was so different to anything I had ever experienced before. It can’t be overcome with sleep, or rest, it has absolutely nothing to do with motivation or willingness. I cannot just ‘decide’ to have some energy. The activity that I do, is completely at the mercy of whether my body can produce the energy to do it, it’s not whether I’m too ‘tired’ or not.

I have had people suggest that I’m just tired, or lazy. I have also had people, who seem to want to show their understanding, and I think they mean it kindly, but they also get it wrong. I can be talking to someone about their busy week and they mention how tired they are, then they hurriedly say “Oh sorry, I shouldn’t be complaining about being tired in front of you”. And I think, “why can’t you?”. Of course someone can complain about being tired in front of me. That person’s tiredness has nothing at all in common with my neuro-immune illness, but by thinking they can’t discuss being tired with me, does seem to suggest that they do think that ultimately, I am only suffering from tiredness, albeit an extreme form, therefore it would be bad form to complain about their tiredness in front of me. So, just for record, I do not mind when people tell me they are tired, people are allowed to be tired, they are allowed to be exhausted, fatigued, knackered, whatever, and they are allowed to complain about it, it won’t offend me, just don’t compare it to the disabling chronic neuro-immune illness that I’m living with.

To illustrate the reality of ME, I have a couple of stories to share, both are really sad I’m afraid.

Merryn Crofts

Merryn Crofts was a young woman from England who died last year, just twenty one years old. Merryn became the second person in the UK to have ME listed as the cause of death on a death certificate. This doesn’t mean that she was only the second person in the UK to die from ME, simply that, it’s unusual to have ME recognised as the cause of death on a death certificate. This is a step forward in the recognition of ME as a serious, disabling and life-threatening neuro-immune illness, but it’s impossible to feel positive about it, not when it was at the expense of Merryn’s life, and Sophia Mirza’s life, the first person in the UK to have ME as the cause of death on the death certificate.

The ME Association reported on the inquest ruling, of which I have shared some excerpts…

[Coronor] Mrs McKenna today concluded her cause of death as starvation caused by a withdrawal of supportive nutrition, caused by M.E. She described Merryn as someone who “bore her suffering with dignity and good grace”.

She said: “Merryn had suffered with M.E. since 2012 which caused severe fatigue, gastrointestinal failure, chronic pain, global hypersensitivity, loss of mobility and function.

“Despite extensive investigations no reason for her gastrointestinal failure which led to her reliance on supportive nutrition was found and it most likely it was caused by her M.E.”

Pathologist Daniel DuPlessis said that a post-mortem showed low-grade inflammation of nerve roots. It was suggested that this inflammation could have made her bowel hypersensitive to processing nutrients.

Dr DuPlessis pointed out that Merryn had inflammation of the ganglia – gatekeepers to sensations in the brain. A post-mortem into the only other UK death attributed to ME, Sophia Mirza, 32, in 2006, also found ganglionitis.

Mental health expert, Dr Ross Overshott, told the inquest that Merryn did not suffer a psychological illness, such as depression or an eating disorder.

He said: “She was hopeful for the future, she could speak in a very involved way about her hobbies and interests, particularly musicals and films.”

[Palliative care doctor] Dr Lippett said she was convinced that Merryn had severe M.E. and was in real, physical pain.

But she said: “There are a lot people, medical professionals, who questioned the M.E. diagnosis and questioned whether it was psychological on Merryn’s part.”

It doesn’t sound like Merryn’s main complaint was tiredness, does it.

Lisa’s Mother

I would also like to share an open letter written by Lisa, a young woman who has ME. Lisa’s mother also had ME, for twenty years, and in her final months, she had pancreatic cancer too. As Lisa’s mother was dying from cancer, she said she wanted people to know that ME, its symptoms, the social isolation and the derision she experienced, were worse than having cancer.

This was originally shared on the Facebook Page: Tom Kindlon’s ME CFS & related page: News, Research and more, and I have permission from Lisa to share it here.

Hiya Tom. How are you?

I’m sad to say that my beautiful mam died of pancreatic cancer last Friday, aged 58, just one month after her diagnosis. BUT HERE ARE A FEW VERY IMPORTANT POINTS:

1. The symptoms of my mam’s ME, which she had for about 20 years, 17 of which were of an official diagnosis, were undifferentiated from the cancer she eventually died from. When she was diagnosed with cancer, her life didn’t even change as she had been in such pain, exhaustion and isolation for 20 years already. It was literally only in the last 3 days of her life where we could tell she now ‘had something different’. How shocking is that? To feel and live like you have aggressive, advanced cancer for so long when blood tests keep coming back fine and people keep telling you to do graded exercise, ‘get out in the sun’ and ‘you’re just depressed’ and for you to be passed from pillar to post with no-one understanding what’s wrong with you. The symptoms of ME were the SAME as the symptoms of aggressive, advanced cancer, for my mam.

2. As soon as the word ‘cancer’ was mentioned, my mam had, thankfully, all the support in the world – endless meals cooked, fast-tracked appointments, visitors who’d stay just the right amount of time – same for me and my sister – so much beautiful support which I’m eternally grateful for. But my sister and I were like ‘My mam needed this level of support and our family needed this level of support all along – why did no-one take us seriously?’ In many ways, ME absolutely destroyed our family.

3. I was so, SO ground down with spending ages explaining to my friends my mam’s ME – her excruciating pain, aversion to light and sound, repeated infections, persistent lack of appetite, almost complete isolation from loved ones, depression, terrible brain fog … only for them to say in passing a few weeks later ‘Uh, ya mam has ME, doesn’t she? She just gets, like, really tired, doesn’t she?’ OR WORSE ‘I get that sometimes, like really tired after a hard week at work.’

4. I am GOING TO CHANGE THINGS. I feel so angry about this disease and STILL the completely ignorant attitude of many doctors, family members and friends about it. I haven’t worked out how, exactly, yet, as I’m still very raw from my mam’s death less than a week ago BUT I am going to make it my mission to make people WAKE THE F*** UP about this devastating illness which, for 20 years, gave my mam THE SAME SYMPTOMS AS AGGRESSIVE, ADVANCED CANCER yet NO SUPPORT from doctors and derision from many other people.

Thank you so much for the support your page gave my mam. Please feel free to repost this or pass it on to anyone you like.

Lots of love, Lisa Lowery. Xxx

It doesn’t sound like Lisa’s mother was feeling ‘just tired’, does it.

I’m so sorry for Lisa, her family, and Merryn’s family, for their losses to this destructive illness.

This is off topic from the main theme of this post, but while on the subject of ME and cancer. ME Advocate, Co-Founder of #MEAction, and Director of Unrest, Jennifer Brea recently shared her experience, on Twitter, as a patient with both ME and thyroid cancer, and the stark difference in medical treatment. Two devastating illnesses, but two wildly different experiences, where treatment is worlds apart.

“I know people have been asking how I’m feeling. I don’t have much to say at this point other than thank you so much for your support over these last many weeks. Overall, I’m weak and it’s going to take time.”

“The cancer treatment at UCLA was world class. I felt like I had walked through a portal into the future. They next day, when no one could understand why I couldn’t sit up, much less walk, I was snapped back to the 19th century.”

“These two experiences – one the result of 60 or 70 years of cancer research, training and practice, the other of decades of total neglect of ME – coexist in the same moment in history. I’ve never experienced the inequality of what we must live everyday in such a direct way.”

Her posts on Twitter resulted in replies from other people with ME who also have, or have had, cancer, and every story was the same. Someone said that amidst crying about dying, she was also crying, more so, because she was experiencing what it was like to be treated with respect and care, like a person worthy of being listened to by health professionals. Someone else said that the discrepancies in support between the two illnesses floored her. She said, while both illnesses are rubbish, and while her cancer is hopefully controllable, unfortunately not curable, she is believed and treated as a human. Another woman said she had the exact same experience when she had cancer eight years ago. The cancer care was brilliant and immediate, with skilled treatment, but ME, is “a desert of twenty six years of solitude, silence, darkness and ignorance”. One man said of his similar experience, that compared to ME, cancer was like “landing on another planet – tailored, effective treatments, sympathy and possibility of a cure”. I’ve seen this discussion come up many times within the ME community, and it’s always the same. People with ME who only after getting cancer, finally get to experience what it’s like to have a specialist doctor, specialist nurses, a treatment plan, care, respect, recognition and support. Then they recover, and they are left on the other side, cancer-free, but back to dealing with their ME on their own, with none of the support. Like Jennifer Brea said, it’s because of the decades of funding and research that cancer has received, yet ME is left behind, neglected in the dark ages.

I hope people understand that I don’t mean to minimise the trauma of cancer, not at all. People with cancer deserve all the support they can get, they deserve the Macmillan nurses, the Maggie’s Centres, the specialised treatment plans and all the love, care, respect and support they can get. But so do the rest of us, those of us with equally traumatising illnesses (and yes, ME is traumatising, as well as severely disabling), we deserve these things too, but we get nothing. I’d love to experience the same level of support, care and treatment, but I certainly don’t want cancer in order for that to happen. I just want the same level of support for people with ME, but it feels as though our lives are just not worthy enough, and I expect this is because, sadly, many people, including our healthcare providers, simply believe that we are only tired.

To end this post, I planned to share this song earlier, but I forgot (brain fog!). This is a version of Bob Dylan’s Blowin’ In The Wind re-written with alternative lyrics by Robert Saunders, who has ME. The recording includes the voices of eighteen people from seven different countries, most of whom have never met or communicated with each other, but are untied in their fight for health equality for people with ME. The images in the video are from the ME Perspective website. The video is dedicated to Anne Örtegren, one of our community lost to this illness. I don’t normally like stuff like this. Usually it’s a bunch of celebrities banding together to sing/murder a great song in the name of charity. But this, I absolutely love, it’s so beautiful, the lyrics are heartrendingly sad, I find it so moving, and I love the reference to the PACE Trial. So I want to give you a chance to cry along to it too!

 

NEWS

MEAction. Volunteer of the month: A Scottish trio!

https://www.meaction.net/2018/06/29/volunteer-of-the-month-scottish-trio/

The Canary. There was a political tremor this week over one of the world’s most neglected diseases

https://www.thecanary.co/discovery/analysis-discovery/2018/06/08/there-was-a-political-tremor-this-week-over-one-of-the-worlds-most-neglected-diseases/

ME/CFS Research Review. Analysis of data from 500,000 individuals in UK Biobank demonstrates an inherited component to ME/CFS.

https://mecfsresearchreview.me/2018/06/11/analysis-of-data-from-500000-individuals-in-uk-biobank-demonstrates-an-inherited-component-to-me-cfs/

Simmaron Research. Large NK Cell Study Points to Autoimmunity and Inflammation in Chronic Fatigue Syndrome (ME/CFS).

http://simmaronresearch.com/2018/06/natural-killer-cell-chronic-fatigue-syndrome-autoimmunity/

Virology Blog. Simon Wessely himself, in a recent Twitter exchange, invited Mike Godwin, an American attorney and social commentator, to review the PACE trial controversy. After scrutinizing the published record, including the PACE research and the special issue of the Journal of Health Psychology dedicated to the issue, Godwin pronounced PACE to be “so profoundly flawed that it cannot be trusted.”

http://www.virology.ws/2018/06/18/trial-by-error-sir-simon-scores-an-own-goal/

MEAction. Westminster Hall debate could be a ‘Turning of the tide’ for ME.

https://www.meaction.net/2018/06/21/westminster-hall-debate-is-turning-of-the-tide-for-me/

The Canary. A cross-party debate has offered a ray of hope for the ‘millions missing’.

https://www.thecanary.co/discovery/2018/06/22/a-cross-party-debate-has-offered-a-ray-of-hope-for-the-millions-missing/

Health Rising. Ron Davis (Finally) Gets His Big Grant! “This proposal aims to uncover the immunological basis of ME/CFS”.  

https://www.healthrising.org/blog/2018/06/25/davis-nih-grant-chronic-fatigue-syndrome/

The Canary. A global campaign group needs the UK’s support to find the ‘millions missing’

https://www.thecanary.co/feature/2018/06/25/a-global-campaign-group-needs-the-uks-support-to-find-the-millions-missing/

ME/CFS Research Review. Dr Ron Davis’s big immune study is looking at HLA genes. Here’s why.

https://mecfsresearchreview.me/2018/06/28/dr-ron-daviss-big-immune-study-is-looking-at-hla-genes-heres-why/

Pro Health. Major Research Group Highlights Inflammation Energy Production Connection In ME/CFS. The Simmaron Research Foundation is bringing the brain, the immune system and metabolism together in a way that’s never been seen before.

https://www.prohealth.com/library/major-research-group-highlights-inflammation-energy-production-connection-cfs-83470