Post Thirty Seven. The Invisible Ones.

My request for the band Suede – please help to make live music accessible for your disabled and/or chronically ill fans who live in permanent lockdown.

I have a request for the music industry. I would like bands to start live streaming at least one performance from each tour, as standard. Not just in times of Covid, but always.

I’m kicking off my campaign (if I can call it that – so far it’s just me screaming into the void) with the band Suede for no other reason than timing. They just happen to be the band taking up the most space in my head at the moment, because they’re who I’d next be seeing live, if I were able to.

I was a teenager in the 90’s and I was obsessed with Britpop, a British music and cultural movement that grew out of a desire to place the spotlight on British indie music over the American grunge scene. Looking back, I actually have some reservations about Britpop, not with the music, which at the time I felt had saved me from my tween self whose musical tastes were, questionable, but with the movement as a whole. I didn’t recognise it back then, but now I see the nationalistic overtones, the whole ‘Cool Britannia’ thing that was so embraced by Tony Blair and New Labour, which gives me the cringe, and the overwhelming whiteness and maleness of the scene, it doesn’t sit quite right with me anymore. So while the movement may have been, in Brett Anderson from Suede’s own words, “…a laddish, distasteful, misogynistic, nationalistic cartoon“, and I think we can agree it’s best left in the past, I am still very fond of a lot of the music from the time.

Despite my fondness for the music though, I rarely listen to it anymore, not unless I’m feeling particularly sentimental. The one exception is Suede. Suede I listen to not for the sake of nostalgia, but simply because they’re great. Their last three albums, since they reformed after splitting up, have been sensational, with their last album being, in my opinion, an absolute masterpiece. Unlike many bands who seem to get a bit lost the further away they get from their heyday, Suede, since their comeback, have been consistently strong, it could be said that they just get better with age.

My current top five albums in no particular order:

The Blue Hour, by Suede

Enter 4, by Hjaltalín

Team Dreams, by Sóley, Sin Fang & Örvar Smárason (their 2017 collaboration)

Island Intervals, by Death Vessel

Hvarf/Heim, by Sigur Rós (a compilation album)

Click on the album titles to listen to these on Spotify.

As a young teenager I’d heard of Suede, but it wasn’t until the release of their third album, Coming Up, that I really got into them, which happens to have been twenty five years ago this month, and I was sixteen years old. My friends and I had managed to obtain almost complete control over the jukebox in our high school canteen, and I still can’t listen to the song ‘Trash’ from Coming Up without flashbacks to our usual lunch table, next to the jukebox, obvs!

Despite Suede featuring heavily in the soundtrack of my teenage years, for some reason I never saw them live, and I have no idea why. I had pretty relaxed parents who were happy to let me go into Edinburgh or Glasgow, even on a school night, to go to gigs, usually at the Liquid Room or the Glasgow Barrowlands. My friends and I always got there early to be at the front of the queue to ensure we got a place right at the front by the barrier. I’ve held many a sweaty hand of various Britpop singers, and I almost always managed to get hold of one of the setlists that had been taped to the stage floor. I have so many wonderful memories of the gigs I went to in the 90’s, but none of Suede, and that’s something I really regret.

With that in mind, it perhaps wasn’t surprising that when Suede announced a tour to mark the 25th anniversary of the release of Coming Up, I excitedly booked a ticket. I’d finally get to see them live, and I’d get to relive the 90’s with the promise that they’d be performing Coming Up in full. There’s a bit of problem though… I have severe ME and I’m predominantly housebound.

So why did I do it? Because I’m addicted to my old life, the life I had before ME. The desire to do the things that make me happy never went away. All I could focus on was the idea of getting to see Suede perform the album that I first discovered them with, and my natural instincts kicked in.

I’m not completely detached from reality, I was fully aware that I may never get to use the ticket. When a situation like this arises though, I can’t help but make myself believe that a spontaneous and miraculous recovery isn’t completely out of the question, and I certainly can’t go if I don’t have a ticket. That’s how I manage to justify it.

But after the anticipation, buzz and excitement of securing a ticket, comes the depression and anxiety as I scold myself for being stupid enough to put myself through this again. Because I’ve done this before. It turns out that I have a pattern when it comes to this particular situation…

  • I see an announcement about a concert that I’d like to attend and…
  • I check when the tickets go on sale.
  • I check the dates of the concert to ensure I don’t have a hospital appointment that week.
  • I go to the venue website to check out access and look for the seating plan to find out where the wheelchair spaces are.
  • I look to see if I’ll be able to book a wheelchair space online but somewhat ironically accessible tickets are never available online (ahem, accessibly), so I email the venue to ask how I go about booking an accessible ticket and hope they reply before the tickets go on sale and sell out. *I can’t call them because speaking on the phone triggers my migraines and I already average eighteen migraine days per month.
  • I find out where the closest accessible parking to the venue is and check that I can use my Blue Badge there.
  • I find someone who can drive me and accompany me using the free companion ticket that tends to come with an accessible ticket.
  • I check the refund policy, because it’s not like I can sell a wheelchair space on Gumtree and there are always so few wheelchair spaces that I want to give someone else the chance to buy it if I can’t go.
  • If, by the time I have all the information I need (which can take a few days because this stuff is never made freely available on their website and emailing back and forth takes time) and the tickets haven’t already sold out (which has happened), I book my ticket(s).
  • I spend a long time hoping I can actually make it this time. Every time I don’t crash as badly as I think I will, or I don’t have a migraine when I usually would, I start to wonder if my ME is improving.
  • But inevitably I conclude that I won’t be able to go, so I contact the box office and either get a refund or lose the money.
  • My mental health will then suffer as my heart aches for everything I’m missing and I’ll feel increasingly resentful of all the people who have the privilege of being able to do the things they want to do.
  • I’ll tell myself to never do this again.
  • I’ll do it again, because life is just too tempting.

This pattern that I follow is driven by my longing to live my life as I did before ME, and even after seven years, letting go of that is not as easy as you might think. Saying that, if you found it difficult not being able to do the things you usually enjoy during lockdown, then you may well have an inkling of understanding. The longer it goes on doesn’t make it any easier by the way, well it hasn’t for me.

So this is exactly what I did when Suede announced their Coming Up anniversary tour. It was originally meant to be in October 2020 but Covid forced them to reschedule, which they did for April 2021, and then Covid forced another change of date, to November 2021, performing at The Usher Hall in Edinburgh on 3rd November.

I might have been the only person who was delighted by the repeated postponement of the tour, because the further away it was, the longer I would have for my miraculous recovery. Now it’s less than two months away, and I won’t be going. That’s pretty much a complete certainty.

The day of the concert will be difficult for me. I’ll have to avoid social media so I don’t see photos or mentions of the concert – deliberately isolating myself even further than I already am in order to shield myself. Then afterwards I’ll be too sad to listen to Suede for a while because it will remind me of missing the concert, and everything else that I’m missing because of this illness.

Online events don’t have to be just for lockdown.

However, there is something that Suede could do to save me, and others like me, from this cycle of emotional trauma. With every tour they go on, they could live stream one of their performances, for a fee, if they wish, I’d pay for a virtual ticket, to allow their housebound fans to participate in the live music experience.

If I knew from the beginning that attending the concert virtually was an option, it would save me from repeating my ridiculous pattern, the crushing disappointment that it always brings and the subsequent crash that my ME will suffer.

My hope is that the live stream would also be made available to tickets holders for a time after the initial event as well. This would allow those of us with energy impairments and/or fluctuating conditions time to watch it after the live stream, or in short chunks over a few days, if that’s what we need.

Importantly, I would also hope that when the band address the audience, they include those of us at home. This would give us a sense of belonging, allow us to feel included, part of the experience, and as valued as the audience that they see standing right in front of them.

Of course it won’t be the same as attending a concert in person, there’s no substitute for the energy or the atmosphere, but it’s the best doable solution that I can think of. It will go a little way at least in closing the gap between live music fans who are housebound due to disability and/or chronic illness, and the bands that they love.

What I’m proposing isn’t particularly radical, but it’s something that we all know can be done, lockdown taught us so. So now it’s just a matter of, do Suede and the music industry at large want to make their live shows accessible to housebound fans? Yes or no?

I’ve tried to make contact with Suede’s people in the hope they would offer to trial my idea on the upcoming tour, but they’re proving to be impossible to reach, or at least impossible to elicit a reply from. I tried Twitter and Facebook, and heard nothing. I emailed the manager of Suede’s fan club, The Insatiable Ones, and asked if they could help. They liked my idea and forwarded my email to the band’s management, but they didn’t respond.

I genuinely thought that my proposal might be something that Suede would consider. Last year, to compensate for the postponement of the tour, they regularly shared old live performances on YouTube. So they do seem to recognise the value of making their music accessible, but sadly it seems that this was only for the time when it primarily benefited fans who were temporarily stuck at home. When it would primarily benefit disabled fans who are permanently housebound, it seems it’s less of a priority.

“…people seem unable to acknowledge that everything they’ve found hardest about the last year is just a way of life for many of us. And now they’re “back to normal” and it feels like we’re forgotten and left behind all over again. It’s hard.

@lornamcfindy, Twitter

At the start of lockdown it was heartwarming to see how communities rallied to support their vulnerable neighbours, and how society opened up and offered online opportunities that disabled people have dreamt of for years. I’d hoped that this new more accessible society would stick around, but now that non-disabled people have decided it’s time for life to go back to ‘normal’, there’s been a noticeable shift in attitudes towards vulnerable/disabled people. This is something that I’m finding incredibly difficult to witness, traumatic even, to see the world opening back up for most people, while closing down again for disabled people. Knowing that access to such events was always possible, but that it was only done (mainly) for the benefit of non-disabled people, for the short time they needed it, really stings.

My guess as to why this is happening is that disabled people just aren’t high on non-disabled people’s radars, if at all. Unless someone is disabled themselves, or they care for a disabled family member, or they work for a disability organisation/charity, generally speaking, people don’t tend to consider disabled people.

The last concert I went to was in Reykjavík, Iceland, in December 2017. As I was planning the trip I asked in an Iceland travel based Facebook group if anyone could tell me the rough cost of a taxi from the bus terminal to the street where my Airbnb was. I made it clear that I’d been to Reykjavík many times before and I knew it was a short distance. These are the replies I got…

If the weather is good and you don’t have a lot of luggage walking is easy.

I would walk both trips with ‘the long way around’…Plenty to see and feel if eyes and heart are open.

You can walk there. It’s about ten minutes.

No one considered the fact that I was asking this question for a reason. No one considered that I would need to take a taxi (for what I acknowledged to be a short distance because I’d been there before) because I am disabled. They all assumed that walking was an option, even when I’d given them a pretty big hint that it wasn’t. For the full story of this little holiday read Post Twenty Three. Wheelchair’s First Holiday.

Perhaps this ableist attitude stems from the fact that disability tends to be a foreign and scary concept for most people. They hate to think that it’s something that will ever touch them, so it’s easier to pretend it’s not there at all, but disability can happen to anyone. It’s the one minority group that anyone can join, it could happen to you tomorrow. It doesn’t matter how healthy you are, how much yoga you do, how many wellness blogs you subscribe to, how many vitamins you take, or how ‘clean’ your diet is… whether through an accident or injury, genetics or bad luck, you could become disabled one day.

Disability is not as far away from most people as they think it is, so it’s best not to pretend it’s not there. Instead, acknowledge it, welcome it, and be active in creating a more accessible world. Then if you yourself one day become disabled, you’ll have far more equal opportunities to participate in society than those who came before you.

The Social Model of Disability

The model says that people are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things.

The social model helps us recognise barriers that make life harder for disabled people. Removing these barriers creates equality and offers disabled people more independence, choice and control.

SCOPE

Sadly it’s a common attitude of non-disabled people though, that disabled people have no interest in the world around them. That we aren’t well-rounded autonomous human beings with hobbies, interests and passions, just the same as non-disabled people. So they have little in the way of motivation to make the changes that would allow disabled people to fully participate in society.

The only reason I can think of why live-streaming events isn’t the norm, outside of a pandemic, is because the people who make events have simply never considered that there’s an audience. Either they genuinely don’t know that housebound people exist, or they they fall into the camp of “why would disabled people want this?”. They’ve been so well conditioned by a society that dehumanises disabled people, that they don’t realise that disabled people crave joy and variety from life as much as they do.

And perhaps that’s part of the problem. Cultural prejudice around disability means it is still too often assumed that disabled people do not actually “have a life, just like anyone else”: that they don’t have careers, relationships, interests or children.”

Frances Ryan, The Guardian

We’re lucky to live in a world in which the knowledge and technology exists to allow online access to events, so why aren’t we fully embracing it? Thanks to lockdown we all understand the value that it brings, so why wouldn’t we want to open up the world and bring joy to those who are forced to live in permanent lockdown?

I don’t know how to reach them.

While I had little luck with Suede’s management, I’m wondering if I’d have better luck with the band members themselves.

I could really do with this blog post somehow falling into the laps of Brett Anderson, Neil Codling, Simon Gilbert, Richard Oakes and/or Mat Osman. I don’t have a clue how to make contact with them though, not with the impenetrable wall that is their management standing between me and them.

So please PLEASE share the crap out of this post!!!

On the remote chance that I can make contact with Suede and they agree to trial my idea, I’m hoping I can use that as a launch pad to start a proper campaign, and have other bands/artists/musicians follow suit.

It would make me deliriously happy if this could happen in time for the Coming Up tour, but I expect it’s too late now. I believe they have a new album in the works though, so maybe then…

I’m quite sure that Suede have the power to make this happen. I can only hope that they value their invisible fans enough to be the band who lead the way in improving access to live music.

Wouldn’t that be a tremendous thing!

~

UPDATE – Friday 17th September

After publishing this post (on Tuesday 14th September) I contacted Suede’s manager directly (I managed to correctly guess his email address!) to explain my situation and I included a link to my blog. Yesterday I received a lovely reply.

It was a really encouraging email.

He likes the idea a lot and he understands how inclusive and significant it would be for the band’s disabled/housebound fans to be able to access Suede’s live shows via a live stream.

As I suspected it’s too soon to be able to make it happen for the Coming Up tour in November, but he and the band’s tour manager are discussing how they might be able to make it work for future tours. Though they can’t make any guarantees.

Overall I felt it was a really positive response.

He also commented on how well I explained my situation regarding gig-going, how well written it was, and that I got my message across incredibly well, which was very kind of him.

I’ll share any further updates if/when they happen.

~

For my personal ‘best of Suede’, click here to take you to a Spotify playlist I made recently for a friend. It’s in chronological order and includes 1-3 songs from all but one of their albums, and 2 b-sides. All of my favourites!

~

NEWS

ME Science & Research

The Guardian. UK to launch world’s largest genetic study into chronic fatigue syndrome

DeCode ME: The ME/CFS Study

Health Rising. The Cortene Drug Trial Results for ME/CFS Are In.

ME/CFS Skeptic. InTime: the results of Cortene’s CT38 trial.

Doctors With ME. Founding father of Human Genome Project joins Doctors with M.E. with leading evidence based policy expert as Honorary Fellows

ME In The News

The Guardian. We’re about to see a wave of long Covid. When will ministers take it seriously?

The Guardian. Apparently just by talking about it, I’m super-spreading long Covid

The Atlantic. Long-haulers are fighting for their future

The Times. Link between long Covid and ME could transform the lives of sufferers

General Disability & Chronic Illness

Forbes. We Need To Rethink The Penalties And Rewards Of Identifying As “Disabled”

Huff Post. Wellness Culture Is Ableism In Sheep’s Clothing

Metro. When spaces are made accessible for disabled people, everyone benefits

The Guardian. Disabled and clinically vulnerable shut out from return of live music and theatre

Post Thirty Six. NICE Delay Publication Of New Guidelines.

Wednesday 18th August 2021 was meant to be a good day. It was meant to see the publication of the long awaited review of the NICE guidelines on the treatment of ME. It was supposed to be a new beginning. The beginning of a future in which people with ME would be taken seriously.

NICE are the National Institute for Health and Care Excellence, the English public body who provide guidance on the appropriate treatment and care of people with specific diseases and conditions. An English organisation, but they also have influence over the Scottish Good Practice Statement, the Scottish version of the NICE guidelines.

We are going to tear it up and start again. We won’t allow it to look the same.”

Professor Mark Baker, Director of the Centre for Guidelines speaking at a NICE stakeholder meeting for CG53: 16th January 2018.

When NICE announced that they were going to review the ME guidelines, I was sceptical, but as I learned more about the review process, and heard what the Director of the Centre for Guidelines had to say, I began to trust them. I trusted that they were going to do right by people with ME.

The old guidelines would unfortunately remain in place until the review was complete, but there was hope that the current recommended Cognitive Behavioural Therapy and Graded Exercise Therapy (CBT/GET) would eventually be scrapped.

These therapies are based on the now discredited theory that ME is not a physiological illness, but a psychiatric condition in which patients have ‘false illness beliefs’. We ‘believe’ we are unwell, we ‘believe’ that we have an intolerance to exertion, and as such we fear exercise and become deconditioned.

The idea behind the therapies is that CBT can cure us of our false illness beliefs, then we undertake a programme of GET to gradually increase our activity, and recover.

This was supposedly proven in the now discredited PACE Trial.

The PACE Trial is the basis on which the NHS ‘treat’ ME. It also impacts heavily on clinical policy abroad, both in terms of government funded healthcare and the private medical insurance industry. Due to the influence of the trial’s authors, funding of ME research in the UK has primarily been poured into psychiatry, rather than much needed biomedical research. Misconceptions about ME already existed, but the PACE Trial cemented these into the minds of the government, the medical establishment, the media and the general public.

The results of the trial were published in 2011. PACE found that patients being treated with CBT/GET over a six-month period improved by 60% while the recovery rate was 20%. However, thanks to a Freedom of Information request by a group of ME patients (which involved a drawn out five year legal battle with the PACE Trial authors spending £200,000 in an attempt to stop the data from being released) it came to light that the researchers changed midway through the trial what constituted as improved and recovered. Participants could end the trial being more unwell than when they started, yet they were still categorised as recovered. The authors basically manipulated the data to reach the conclusion that they wanted. When the authors were forced to release the raw data, new analysis found that patients actually only experienced a 20% improvement, and only 5% could be considered as recovered. Would a pharmaceutical intervention with such low odds be approved for use?

Uniquely for a clinical trial, and very strangely, the PACE Trial was partially funded by the Department for Work and Pensions (DWP), the UK government department for sickness, disability and pension benefits. Is it a coincidence that the PACE Trial is often used to deny ME patients disability benefits?

It’s also worth noting that the trial used the Oxford criteria for the diagnosis of the participants, which is widely considered to be overly broad and it doesn’t include the cardinal symptom of ME, Post Exertional Malaise (PEM), an intolerance to exercise/exertion. Rather, it lists fatigue as the main symptom. Furthermore, research has shown that for every fifteen patients selected under the Oxford Criteria, fourteen will be false positives when compared to the more up-to-date and robust Canadian Consensus Criteria. So we don’t even know how many of the trial participants had ME to begin with.

Thankfully, the truth came out, and while the trial hasn’t yet been officially retracted, it is widely discredited. It’s even being taught at the University of California, Berkeley, as an example of how not to conduct a clinical trial. Very embarrassing for the trial’s authors!

I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century.

Carol Monaghan MP speaking at the PACE Trial: People with ME, House of Commons Debate, 20th February 2018

As if the bad science wasn’t enough, it gets worse. It turns out that the PACE Trial authors failed to disclose a conflict of interest. The main investigators of the trial had financial and consulting relationships with disability insurance companies, advising them that rehabilitative therapies like CBT and GET could help ME claimants get off benefits and back to work. They gave the medical insurance industry a reason to withhold payouts – a condition of the payout would be that the ME patient undergoes a GET programme, which many refuse to do as they know it would make them worse. So, it’s not surprising why the trial authors have such a vested interest in keeping these therapies in the NICE guidelines.

The proponents of CBT/GET have nothing but contempt for ME patients. They believe us to be ‘malingerers’, that we perpetuate our false illness beliefs for ‘secondary gains’. Meaning, they think that we benefit from having a disability in terms of what we can gain from it: social security/benefits, equipment, accommodation, support, care and attention from family and friends, a good excuse to avoid things we don’t want to do, and my favourite, apparently we enjoy the ‘social mystique’!

Image of a slide from a presentation “Medically Unexplained Symptoms” – an approach to rehabilitation by Prof Lynne Turner-Stokes at Northwick Park Hospital. ME is listed as an example of one of these illnesses.

Now that I think about it, of course these gains make up for the loss of my career, having to sell my beautiful flat in Edinbugh, having to withdraw from my dream-come-true of spending four months living and working in Antarctica, the loss of friendships, the loss of income, my loss of self-worth and sense of purpose, the pain, the chronic migraines, the comorbidities, the loss of my fertility, the loss of my strength, fitness and stamina, not being able to participate in my hobbies, the food intolerances, the isolation, the loneliness, the anxiety, the fear, the depression, the suicidal ideation, the loss of my freedom and independence, the stigma, the ‘yuppie flu’ jokes, the intolerance, the ableism, the discrimination and the inaccessibility. Yep, I’m good with these, because never mind Antarctica, all I’ve ever wanted is to have my sole income be at the mercy of the grotesquely inhumane DWP, and don’t forget my ‘social mystique’.

One of the cardinal symptoms of ME, in fact, THE cardinal symptom of ME is exertion/exercise intolerance. This is backed up by science – people with ME have a pathological inability to produce energy on demand at a cellular level. Research has found immune cells taken from the blood of people with ME show clear signs of low energy production. Simply put, if exercise makes you feel better, then that in itself rules out an ME diagnosis.

CBT and other talking therapies can be helpful to support ME patients as they learn to cope with having a chronic illness, but in the context of the NICE guidelines, that is not the manner in which CBT is currently recommended. It also seems that GET may be an effective treatment for some conditions, but not only is it ineffective for people with ME, it’s dangerous.

For ME patients, GET is “extremely barbaric” and “government sponsored malpractice”.

Ron Davis, Professor of Biochemistry & Genetics and Director of the Stanford Genome Technology Center at Stanford University, and the Open Medicine Foundation’s Scientific Advisory Board Director, speaking at an Emerge Australia research symposium.

Ron Davis speaking at an Emerge Australia research symposium. Full video can be found here.

There is a long history of GET harming people. So many stories around the world from adults and children whose ME worsened after GET. People who could walk pre-GET but required a wheelchair afterwards. People who previously had a life outside of their homes but became bedbound. People who knew GET was harming them but were forced through it in order to access benefits or medical insurance payouts. GET has forced young adults with no alternative support system into care homes for the elderly. GET has stripped people of what little quality of life they had. GET has caused Post-Traumatic Stress Disorder (PTSD). GET has caused permanent and severe disability. GET has resulted in loss of life. There’s no official record of this though. Unlike with pharmaceutical interventions, in which (in the UK) we can report side-effects through the Yellow Card Scheme, there is no official channel to report the harm caused by these therapies. So all the evidence is anecdotal, and for some, that’s not proof enough.

After decades of GET being forced upon ME patients, after all the harm that has been caused, we finally began to believe that things were going to change. In November 2020 NICE released the draft of the new guidelines, and the ME community were collectively delighted to find that GET was to be scrapped, and that CBT should only be used to help patients cope with having ME. This was monumentous news. ME patients in the UK were no longer going to be harmed by this dangerous practice, and it would hopefully also influence ME guidelines worldwide.

“Do not offer people with ME/CFS: any programme based on fixed incremental increases in physical activity or exercise, for example Graded Exercise Therapy.”

Excerpt from NICE Draft Guideline

“Only offer cognitive behavioural therapy (CBT) to people with ME/CFS who would like to use it to support them in managing their symptoms of ME/CFS and to reduce the psychological distress associated with having a chronic illness. Do not offer CBT as a treatment or cure for ME/CFS.”

Excerpt from NICE Draft Guideline

“Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness.”

Excerpt from NICE Draft Guideline

Click here for the full draft guidelines.

I think we were all fairly confident that this would make it into the final guidelines, and the date for publication was set for Wednesday 18th August 2021.

Then on Tuesday 17th August 2021, NICE released a statement…

NICE pauses publication of updated guideline on diagnosis and management of ME/CFS

NICE has today (17 August 2021) taken the decision to pause publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).

The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating condition.

Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.

NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all.

We want to thank everyone who has contributed to this guideline and particularly the committee and the patient groups who have worked so diligently. However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.

In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.

NICE 17 August 2021

We all knew that not all medical professionals were on board with the removal of CBT/GET. Not because they have ME patient’s interests at heart, but because there are some very influential people with a vested interest in keeping CBT/GET in the guidelines. Disappointingly it now appears that NICE are bowing down to pressure from within the medical establishment. This isn’t about science, or evidence, or medicine, it’s about politics, and perhaps even nepotism.

I knew there would be significant push back from certain parties. Before NICE released their statement on Tuesday I posted on Twitter…

How long until Wessely, Sharpe & co publicly push back against the new NICE guidelines? They’ll be desperately trying to save their professional reputations in the wake of NICE formally denouncing their life’s work on #MEcfs.

@PhoebsBo, Twitter, 17/08/21 2.06pm

I didn’t expect it to happen QUITE so quickly, I Tweeted this less than three hours later…

Well, right away it seems. I can’t think of any other reason why @NICEComms are now delaying the publication of the new guidelines, other than the interference of Wessely, Sharpe & co. NICE are not above corruption, it seems.

@PhoebsBo, Twitter, 17/08/21 4.44pm

Interestingly The Times reported on Tuesday about a planned backlash from within the medical establishment…

Disputed therapies for myalgic encephalomyelitis abandoned

The Times understands that leading medical bodies are considering refusing to endorse the guidance.”

Sean O’Neill, The Times Tuesday 17th August 2021
The Times, Sean O’Neill, Tuesday 17th August 2021 (because the above link is behind a paywall)

In my Tweets I mention Simon Wessely and Michael Sharpe, both of whom are amongst those with the vested interests.

Simon Wessely is a British Professor of Psychiatry at King’s College London. He helped develop the cognitive behavioural model of ME/CFS, a rehabilitation-based model in which unhelpful thoughts and avoidance behavior are believed to perpetuate the symptoms of ME/CFS, and he helped design the PACE Trial. Wessely believes ME/CFS to be a ‘general disorder of perception’.

Michael Sharpe is a British Professor of Psychological Medicine at St Cross College, Oxford University. Sharpe was author of the Oxford ME/CFS diagnostic criteria, he helped develop the cognitive behavioral model for ME/CFS and ‘medically unexplained symptoms’, and was one of the principal investigators of the PACE Trial, along with Peter White and Trudie Chalder.

Wessely, Sharpe, White and Chalder are some of the UK’s biggest CBT/GET proponents. They are responsible for CBT/GET being in the NICE guidelines to begin with, so of course they don’t want them to be scrapped. As well as screwing up their relationship (and cash flow) with the medical insurance industry, it would essentially mean that NICE were formally denouncing their life’s work on ME. It would leave their professional reputations in tatters.

Photograph of Simon Wessely, Michael Sharpe, Peter White and others attending a meeting on ‘Malingering and Illness Deception’ in 2001. This meeting was funded by the Department for Work and Pensions (DWP), the UK government department for sickness, disability and pension benefits, who also funded the PACE Trial.

It is believed, though I don’t know if confirmed, that that the medical establishments at the heart of the above mentioned backlash are the Royal College of Physicians, the Royal College of Paediatrics and Child Health, and the Royal College of General Practitioners. Now, what is it about the RCGP, oh yes, their President is Dr Clare Gerada, wife of Simon Wessely.

It’s also interesting to note that just two weeks (or so) before the publication date three members of the NICE guideline review panel suddenly quit. They were known proponents of CBT/GET (the panel included professionals both for and against for the sake of balance), and seemingly they quit because they didn’t support the new guidelines. Of the three who quit, two of them work as clinical leads for ‘fatigue services’ in the UK and the third is a senior physiotherapist at another similar service. All of these services of course offer CBT/GET as treatments, and I’m guessing that if they are scrapped, these three will be out of a job. Is that not a huge conflict of interest?

It is my belief that it really doesn’t matter if not all doctors are behind the new guidelines. Presumably not all doctors were behind the last lot of guidelines, but NICE went ahead and published them. NICE are there to provide guidance to the NHS, they don’t take their orders from individual doctors or medical associations. They should not allow themselves to be dictated to by a handful of rotten doctors who don’t care a jot about ME patient welfare. So I say, publish the new guidelines anyway and THEN deal with those who refuse to implement them, perhaps by removing their privilege to practice medicine?

Some argue that by removing CBT/GET from the guidelines we’ll be left with nothing, no recommended treatments. GOOD! No treatment is better than a harmful treatment. How anyone is unable to grasp this is beyond me. Even without a treatment there is still plenty that NICE can do to guide the NHS. They can guide GPs on how they can best support their ME patients, how to manage symptoms, to advise their patients to rest and pace, how to support patients who are severe/very severe, when to offer home visits, how to handle hospital admissions, how to support disability benefit, Blue Badge and social care applications, etc. Removing CBT/GET doesn’t mean we’ll be left with a blank page where the guidelines used to be. Even if it did, that would be infinitely better than guidance that knowingly harms patients. The removal of CBT/GET will also pave the way for future funding of biomedical research, because the government will no longer be able to deny funding for research with the excuse that ME already has ‘treatments’.

I have so many questions rolling around my bewildered head…

  • Have NICE ever bowed down to pressure from medical professionals upon the pending release of guidelines for any other condition?
  • Why aren’t they standing behind their own procedures?
  • Do they not have confidence in their own investigative process?
  • Why spend over three years studying the evidence, come to a solid conclusion, only to back down the day before?
  • NICE previously reported that the evidence used to back up CBT/GET to be of “low” or “very low quality”, so why change their minds now?
  • What new evidence came to light in the hours before publication?
  • Are they saying that the last three years of work were a waste of time?
  • Are they worried that Wessely, Sharpe & co are going to take legal action, and they’re buying time to plan their defence?
  • Instead of coddling a group of tantruming ME sceptics, shouldn’t they focus on doing what is right by the ME community – a community who they acknowledge has historically experienced prejudice, disbelief and stigma by people who do not understand ME?
  • Why are they so overly concerned about pleasing all of the medical professionals at the expense of patients?
  • Why are ME patients not their priority?
  • Since when did the practitioner of the therapy trump the needs of the patient?
  • Why are the people who are responsible for harming us still being allowed to influence our healthcare?
  • Are NICE exceedingly weak, or are they corrupt?

The ME community need answers. NICE owe us transparency. So many ME patients gave their time and energy to inform the new guidelines, filling out questionnaires, sending evidence of harm caused by GET and encouraging others to do the same. In fact NICE received 4000 responses to their consultation, which they said was “significantly higher” than usual. As such they had to delay publication of the final guidance by several months to give themselves time to consider them. I think many of us appreciated that they were taking the process so seriously and we’ve waited patiently. But now, after all we’ve given, all we’ve been through, the trauma of having such a maligned illness, the gaslighting we’ve endured, we deserve the truth. They can’t leave us here, abandoned, dangling in limbo, having no idea what our future holds.

So many of us were ‘living’ for this moment. I have told myself previously, on occasions when I’ve felt suicidal, that I must wait until the NICE guidelines review. I mustn’t do anything permanent, not yet, not when there’s hope that attitudes towards ME may change. I had to hang on, at least until the publication of the new guidelines. I don’t feel the same now, but there are many who do. What do they do now? Keep waiting, indefinitely? ME patients have been waiting for change for decades, it has never happened, so why should we believe it ever will?

The ME community are currently devastated beyond belief. It’s been a long time since I’ve felt quite so dejected and let down, and by an organisation who told us they were going to help us. NICE gave us hope of a lifeline, then snatched it away in the final moments. Unfortunately this situation perfectly represents the way in which ME patients are used to being treated, with disdain, neglect, and a complete lack of care or respect.

NICE should be utterly ashamed of themselves.

#MEACTION PETITION

Please sign this #MEAction petition calling upon NICE to publish the finalised ME guideline in its current form.

SOME NOTABLE REACTIONS TO THE NICE STATEMENT

“For many years, campaigners for psycho-behavioral interventions for ME/CFS have accused patients who objected to the research as being anti-scientific zealots. It was always a ridiculous charge, but developments this week have made it clear, if there was any doubt, that these entitled bullies are the ones immune to the actual evidence…”

David Tuller, Virology Blog. Trial By Error: NICE Squares Off Against Royal College Bullies Over New ME/CFS Guidelines.

I feel frustrated and angry. The action of a small number of people who have persuaded the leadership at the Royal College of Physicians, the Royal College of Paediatrics and Child Health, and possibly other Royal Colleges, to put pressure on NICE to reconsider what had already been agreed by the guideline committee, is reprehensible…

Dr Charles Shepherd, ME Association, Medical Advisor. The NICE Guideline ME/CFS: Personal Observations

@NICEComms has to decide whether it’s a science-based organisation, or whether it’s beholden to a lobby group that refuses to let go of dangerous and long-discredited quack “treatments” for ME/CFS. Its credibility hangs on the outcome.

George Monbiot, Journalist, Twitter

Decision of NICE to delay publication of new guidelines for management of ME is a massive blow to patients & charities who have campaigned for better treatment. Have the three years NICE has spent on this been wasted? ME community deserves so much better!

Carol Monaghan, MP, Twitter

Dear NICE, What new evidence was presented 24h before publication of the new ME/CFS Guidelines? Your draft guidelines said that quality of all 236 separate CBT/GET outcomes was “Low” or “Very Low”. To progress science & clinical care we need to see the evidence.

Professor Chris Ponting, Section Head at Biomedical Genomics, Chair of Medical Bioinformatics, and Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Molecular Medicine at the University of Edinburgh. Deputy Chair of the UK CFS/ME Research Collaborative and Principal Investigator for the DeCode ME/CFS Study, Twitter

“Unbelievable. A tiny cadre of powerful psychiatrists with their legacies on the line are stepping in to try to overturn scientific consensus and the advocacy of tens of thousands of ME patients. UK healthcare is just as broken as US healthcare, just in a different way.”

Jennifer Brea, Co-founder of #MEAction, Director of ME Film Documentary Unrest, Twitter

NICE has delayed publication of new treatment guidelines for ME after @thetimes revealed a planned backlash from the medical establishment. The only losers here are people with ME.”

Sean O’Neill, Journalist, Twitter

ME CHARITY STATEMENTS

The ME Association

Action For ME

#MEAction

Invest In ME Research

ME Research UK

Doctors With ME

IN THE NEWS

Please note, in an effort keep my stress levels down I haven’t read any of these articles, so I can’t vouch for the accuracy.

BBC Outrage at chronic fatigue syndrome advice update pause

The Guardian UK health standards body delays new ME guidance in therapy row

Huff Post ‘We Are In The Dark’: Despair For ME Patients As Doctors Can’t Agree On Treatment

The Canary A national health body seems set to throw millions of people under the bus

Daily Mail Health watchdog PAUSES publication of NHS guidelines for treating chronic fatigue syndrome amid dispute over right way to treat the condition

The Independent Health watchdog accused of ‘capitulating to vested interests’ over chronic fatigue as it delays new advice

The Telegraph Health watchdog pauses plans to scrap therapy and exercise as treatments for ME

The National Carol Monaghan hits out over delay to guidance for ME diagnosis and management

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

 

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/