Post Twenty Seven. No, I’m Not Tired.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Merryn Crofts

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

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

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

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

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

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

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

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

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

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

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

Lisa’s Mother

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

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

Hiya Tom. How are you?

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

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

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

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

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

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

Lots of love, Lisa Lowery. Xxx

It doesn’t sound like either Merryn or Lisa’s mother were feeling ‘just tired’, does it…

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

On the subject of ME and cancer. 

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

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

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

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

Her posts on Twitter resulted in replies from other people with ME who also have, or have had, cancer, and every story was the same. Someone said that amidst crying about dying, she was also crying, more so, because she was experiencing what it was like to be treated with respect and care, like a person worthy of being listened to by health professionals. Someone else said that the discrepancies in support between the two illnesses floored her. She said, while both illnesses are rubbish, and while her cancer is hopefully controllable, unfortunately not curable, she is believed and treated as a human. Another woman said she had the exact same experience when she had cancer eight years ago. The cancer care was brilliant and immediate, with skilled treatment, but ME, is “a desert of twenty six years of solitude, silence, darkness and ignorance”. One man said of his similar experience, that compared to ME, cancer was like “landing on another planet – tailored, effective treatments, sympathy and possibility of a cure”.

I’ve seen this discussion come up many times within the ME community, and it’s always the same. People with ME who only after getting cancer, finally get to experience what it’s like to have a specialist doctor, specialist nurses, a treatment plan, care, respect, recognition and support. Then they recover, and they are left on the other side, cancer-free, but back to dealing with their ME on their own, with none of the support. Like Jennifer Brea said, it’s because of the decades of funding and research that cancer has received, yet ME is left behind, neglected in the dark ages.

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

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

 

NEWS

MEAction. Volunteer of the month: A Scottish trio!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Post Fourteen. ME and Me, By Amelia.

Welcome to my first guest post, written by my very talented niece Amelia, who is twelve years old.

It began a school assignment, ‘A primary seven personal project about a subject of her choice of interest to her’. To my delight and surprise, Amelia chose to do this assignment on the subject of Myalgic Encephalomyelitis (ME), and how my illness affects her. It’s an impressive piece of work. She did her own research, she chose some really descriptive images, and she makes some very interesting and insightful observations. I admit that when I read her first draft, it had me in tears, in a good way! I am just moved beyond belief that Amelia chose to use this as an opportunity to raise awareness of ME, I’m so proud of her, and I’m a little bit in awe of her to be honest. Again this has made me feel so incredibly lucky to have such supportive people in my life.

Everything else you’ll read below, is by Amelia.

 

ME and Me, by Amelia.

“The good news is, these patients don’t die. The bad news is, these patients don’t die.” Ron Davis – Geneticist

This quote was made by a Californian geneticist whose son suffers from Myalgic Encephalomyelitis.

Myalgic Encephalomyelitis, commonly known as ME is a chronic illness which has affected my family since early 2015 when my Auntie Phoebe was first diagnosed.

In this report I am going to first tell what ME is, how it is caused and some of the symptoms of ME. I will write about the very common misconceptions that many people have regarding ME. I will write about how it affects my Auntie Phoebe and how it affects me and my family. I will also write about what is currently being done to help sufferers and how we can help people who are affected by this horrible illness.

Myalgic Encephalomyelitis

What is it?

Myalgic Encephalomyelitis, also know as ME, is a terrible illness that affects hundreds of thousands of people across the UK and millions worldwide.

It is a neurological illness, which means that there is something physically wrong with the nervous system. It is also a chronic illness, which means it is life long and there is currently no cure. It affects many body systems like the nervous system, which is the network of nerve cells that communicates with the brain, and immune system, which fights germs and diseases.

Many ME sufferers have severe, persistent fatigue. Fatigue is another way of describing extreme tiredness.

Not everyone who has ME will have the same symptoms so it is impossible to compare them to one another. Two people might get ME at the same time from the same probable cause but one could recover in a few years and the other could have it for the rest of their life. That’s one of the reasons why it’s a very hard illness to understand.

img_0762Symptoms of ME

· Post-exertional malaise. This is the extreme exhaustion felt after any physical or mental activity, such as a phone conversation, filling out a form, taking out the bins or making tea, or the worsening of all symptoms.

· Gastro-intestinal problems. These are problems with the stomach, gut and intestines.

· Cognitive dysfunction. This is also known as brain fog. When you have brain fog, you are unable to remember, reason, concentrate and think.

· Headaches

· Sleep problems

· Muscle weakness

· Intense pain all over the body

· Depression, as ME limits human interaction so much so it is easy to become depressed.

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These are only a few of the many symptoms. Every ME sufferer experiences different symptoms at different times.

Causes

The exact causes of ME are unknown, but there are many theories of what they could be. Here are some of them.

· A viral or bacterial infection that damages your immune system

· Your genes

· A hormonal imbalance

· Immune system problems

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What can be done?

The NHS have created a treatment plan for ME sufferers that is meant to relieve their symptoms. Many ME specialists disagree strongly with these methods as they have been proven to cause harm to patients. The plan consists of daily exercise, like swimming and walking. ME sufferers are sometimes unable to stand up, how could exercise help them?

It would tire them out so quickly, they would have to interact with others and the payback the next day would be horrific. These plans could worsen patients significantly.

There is no cure for ME. Invest in ME, which is a research charity trying to find a cure for ME, is hopeful that one day there will be a cure. Current treatment can only treat the symptoms, not cure the illness.

img_0765Common Misconceptions of ME

ME is a very misunderstood illness that people don’t take seriously. It is commonly called “yuppie flu”, which is offensive in so many ways to ME sufferers and their families. In the 1980s, it was dismissed as yuppie flu or shirker syndrome. People said that if they went out for some fresh air or even go see a therapist, that they would feel better. Some people said they were faking it or some put it off as being a bit tired. Due to modern research, these horrible remarks and rumours have been proved wrong but there are many people out there whose belief of ME needs to be put straight. The more people that are told the truth about ME, the better.

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My Experience of ME

My Auntie Phoebe was diagnosed with ME in early 2015.

Before she was diagnosed, she was a shift coordinator working at a food depot run by a homelessness charity. She was in charge of recruiting, training and supervising volunteer workers and helped manage the depot. She organised pick ups and deliveries of food to many charities working with homeless and vulnerable people in Edinburgh. She loved being in such an important position and giving people a chance to get back on to their feet. She also loved driving a forklift truck!

A few months before she become ill, in May 2014, Phoebe was offered her dream job, working at the Penguin Post Office in Port Lockroy, Antarctica. In summer 2014, she started to feel ill and went to several doctors and consultants before being officially diagnosed with ME. Heartbroken, Phoebe had to withdraw from this amazing opportunity. She has been practically house bound since then. Just over a year ago, she had to move from Edinburgh to Peebles to be nearer my Grannie. She had to stop working in 2014 and now lives on (very few) benefits and her savings.

One of the things that Auntie Phoebe does to help her come to terms with her illness is to write a blog called puffins&penguins&me about her experience of ME. It is beautifully written and very informative.

She also encourages her friends and family to hold fundraising events. Last March, the day before Mother’s Day, my mum and I held a fundraiser for Invest in ME. We organised a mother and daughter afternoon tea in the Scout Hut in Currie. We advertised on Facebook and sold etickets. We made many different kinds of cake and sandwiches, served tea and coffee, borrowed massage tables and set up a nail bar so mothers could get pampered by their daughters. We also asked local businesses for raffle prizes and sold tickets. We made £651 and we gave half to Invest in ME and the other half to my gymnastics club.

It was my Grannie’s birthday a few weeks ago, which happened to be on National ME day on 12th May. She threw a party wanting only donations for Invest in ME. She made over £1000!

One of the most difficult things about ME is that sufferers do not look ill. Phoebe went to Grannie’s party and looked beautiful. She managed to stay out for nearly 3 hours, which is the most socialising she has done in years. What people don’t see is the suffering she had the next day.

This is an excerpt from her blog.

“Today I woke up with the worst ‘hangover’ of my life. That’s the best way to describe it. Before you say anything…I only drank water last night, I can’t drink alcohol since I’ve had ME. It took me over two hours after waking up this morning to be able to move and get out of bed, despite desperately needing to pee. I had to crawl to the bathroom, and then back to bed to rest from the overexertion of going to the bathroom. I wanted to brush my teeth but I couldn’t hold my arm up. After another hour of lying down I was able to come upstairs to prepare coffee and something to eat. My head is absolutely pounding, my sinuses are throbbing, my throat hurts, my limbs are heavy, my muscles are aching, there’s an imaginary elephant sitting on each of my shoulders weighing me down, my skin is sore, I’m nauseous, my tonsil wounds are hurting again, it hurts to swallow, I feel faint and dizzy, I’m weak, I feel like I have a temperature (ok, I just checked it and I do have a temperature) and my brain is absolute mush.”

Before she got ME, I would see my auntie all the time, have days out, sleepovers and holidays together. Now Phoebe is so affected by this horrific illness that I rarely see her. Often we arrange to meet her but then she is so ill that we can’t even pop in to say hello or give her a coffee. I love her so much and I would see her everyday if I could.

A Typical Day

These are Phoebe’s words but I have changed them a bit.

  • 10pm – 1am – Falling asleep – this never happens easily and often takes hours.
  • 1am – 11am – Broken sleep, often with hours of wakefulness. A symptom of ME is insomnia.
  • 11am – 2pm – I try to wake up and get up. This can often take hours. When I wake I feel paralysed. I wash my face and brush my teeth and check emails. I can no longer shower every morning.
  • 2pm – I go upstairs and make breakfast. I am completely vegan and eat nothing processed.
  • For the next few hours – I lie on the sofa, sometimes watch tv. I can’t read a book as I can’t focus for long enough. I have to close my eyes for 5 minutes every half hour to regain some energy but I never nap. I slowly prepare dinner, having a rest every few minutes. A 20 minute meal takes over 3 hours to prepare. Sometimes my mum comes in to visit me, she does my dishes and takes out the bins. I listen to music. I suffer from pain every day. I also have sensory overload so I wear noise cancelling headphones and only take them off when I have a visitor. I leave the house every Wednesday for an appointment with my counsellor and rarely leave the house apart from this.
  • Late evening – I go to bed and it all starts all over again.

What you can do to help

I am not going to tell you to become a neurological scientist to help ME sufferers. There is one very simple thing that you can do to help. TELL PEOPLE! All you need to do is tell others about this illness. It doesn’t matter who it is, your mum, dad, grannie, grandpa, uncles, cousins, friends, as long as you are telling someone. Tell them to tell others too! I know it sounds like a movie plot but seriously, just spreading the word can help. So, please help brighten the future of ME and tell everyone you know about this horrible illness.

On Friday 12th May, there was a demonstration outside the Scottish Parliament, trying to persuade SMPs to spend more time understanding this illness. This movement is called #millionsmissing meaning that millions of people are missing out on their lives. It was symbolised outside Parliament by pairs of shoes that never go outside. Here are Auntie Phoebe’s work boots on her forklift truck.

IMG_8664

I know it won’t happen overnight but I really hope that one day, science will have found a cure for ME.

Glossary

Myalgic Encephalomyelitis – A medical condition characterised by long-term fatigue, pain and other symptoms that limit a persons ability to carry out ordinary activities.

Neurological – relating to the anatomy, functions and disorders of the nerves and nervous system.

Post-exertional malaise – The exhaustion felt after any activity and worsening of all symptoms.

Cognitive disfunction – also known as brain fog which means you can’t think clearly.

#millionsmissing – the movement of ME sufferers and supporters to make ME a more understood illness.

Post Eleven. From Healthy To Not Healthy.

Part Two – Finally diagnosed

If you’re new to my blog I’d recommend you read Post Three. From Healthy To Not Healthy. Part One – The beginning first.

I don’t particularly enjoy writing about this, dredging up stuff from the past couple of years is hard going, but I’m a perfectionist. So, for the sake of ‘completeness’ I have finished writing this story, it’s only taken me seven months! It also turns out that Part Two is really very long, but I want it over with, so you’re getting a really long post, rather than a ‘Part Three’.

Ok. So I was signed off work on Monday 15th December 2014, I wasn’t in Antarctica and I didn’t know what was wrong with me.

During my time off work I spent a lot of time researching my symptoms, which can be dangerous I know. But in my case, it led to my diagnosis. Like most people who don’t know anyone with ME, I didn’t know a great deal about it, not that I was completely ignorant, I did know that it had the ability to completely derail lives. But I researched and I read everything I could find about ME, and well, it was eye-opening. Everything kind of fell into place, I was quite sure this was what was wrong with me. I brought it up with my GP who agreed that it fitted my symptoms and she suggested I ask about it at my upcoming neurology appointment.

My neurology appointment was early-January. The consultant however refused to talk about ME which I found that odd, you know, given that ME is a neurological illness. My first experience of just how crap the medical community can be when it comes to ME. Anyway, all she cared about was ruling out MS, so she booked me in for a MRI scan of my brain. She did have one helpful suggestion and that was for a migraine preventative medication. I’ve been taking this medication ever since, I still get roughly two migraines a month, but that’s a huge improvement, so it’s a thumbs up for the drugs.

My MRI scan was in early-February, it was great fun! It was my first MRI and I found it fascinating. Around this time my GP also started ordering blood tests. If MS was ruled out, to reach a diagnosis of ME she had to rule out a whole host of other illnesses with similar symptoms first.

In early-February I also had a meeting with one of my colleagues, she was the benefits adviser at the charity I worked for. I was still receiving sick-pay from work, and would do so for another four months. I couldn’t possibly conceive of this situation arising but I felt it was a good idea to find out what benefits I would be eligible for, should the need arise. I left with lots of information and phone numbers. I knew exactly who to phone and when, should I still be off work after my sick-pay ends. I kept insisting this wouldn’t happen, but I like to be organised. The information she gave me turned out to be invaluable.

Around this time I was still able to go out socially on occasion. I met my mum for lunch once a week and met up with individual friends every two weeks or so. I went to an Ólafur Arnalds concert in Glasgow one evening and I didn’t suffer afterwards. I was going out for short walks, I discovered yoga and was practising almost daily at home using YouTube videos. I certainly wasn’t back to my healthy self but felt like I was getting better and was sure I’d be back at work fairly soon.

In early-March I got my MRI results, confirming that I didn’t have MS. My blood tests all came back negative, apart from my Vitamin D test which showed a slight deficiency, not unusual for someone living in Scotland. With all the other possibilities ruled out, and because I met the ME diagnosis criteria, I was then diagnosed with ME. Well, it actually felt like less of an ‘official’ diagnosis, but more like a ‘let’s just settle with this shall we?’. Now, here is the advice my GP gave me, she said, “you’ll find lots of information about ME online”. Yes. She basically told me to Google my (serious, debilitating and life-altering) illness. Back when I first suspected ME my GP did actually refer me to Edinburgh’s ME Service at Astley Ainslie Hospital. They wouldn’t be able to cure me (there is no cure), but they would help me learn to manage my illness and help me cope with it. So at this point they were my only hope. I felt pretty lost and the sum total of my knowledge of my illness was from the internet.

Something I forgot to mention in part one – A few months previously I had also been referred by my GP to a gynaecologist. Since my ME symptoms had begun my menstrual cycle also got worse (you probably don’t need the details), and I suspected I had endometriosis, apparently common in combination with ME. I first saw the gynaecologist in November (2014). She didn’t believe I had endometriosis and refused my request for a diagnostic laparoscopy to at least rule it out (you’ll need to remember this detail for later). But she did suggest a Mirena Coil, a hormone releasing IUD (intrauterine device) that sits in the uterus. It would hopefully, eventually stop my period altogether, or at least make it more bearable. She told me to go away and think about it. She also said if I wanted to go ahead she would prefer to insert it under general anaesthetic, because I haven’t had babies (I thought that was a bit over the top). My next appointment with her was late-March, I assumed it was to have the coil put in because I had already phoned her receptionist to say I wanted to go ahead, but the appointment was actually just to ask if I’d thought about it. I told her I had, that I wanted to try the coil, that I didn’t want an anaesthetic and could she do it there and then. She agreed but she warned me it would be incredibly painful. I actually didn’t find it painful at all, uncomfortable yes, but not painful, she was amazed. I guess when you experience pain daily you end up with a higher tolerance for pain? Anyway, I left feeling really positive, a potentially period free life and I thought my health was on the mend, things were good.

Unfortunately, all was not good. The next day I felt dreadful, not just the expected cramps and bleeding from the coil but all my ME symptoms. My symptoms got increasingly worse, worse than anything I’d experienced yet, and the cramps didn’t ease up at all. After two weeks I couldn’t take it any more and I called my GP and asked to have the coil removed, initially they refused, telling me to give it longer, it was only when I told them I’d yank the thing out myself if they wouldn’t do it that they told me to come in that day. The cramps eased instantly after it was removed. But unfortunately my ME symptoms didn’t get better. It appears I had suffered a relapse, a severe worsening of my symptoms that have never improved.

A few other things (upsets) happened around this time. I found out that my referral to the ME Service hadn’t actually been done. My GP had forgotten. I found out when I called Astley Ainslie Hospital to ask how long I could expect to wait, they had never heard of me. My GP did then make the referral but by then I was 6 weeks behind on the already 14 week waiting list. It was also around this time that I received disappointing news about Antarctica. I had previously been told that if/when I was well again I wouldn’t need to go through the selection process again, I just had to let them know when I was ready for the next season, and I’d be on the team. Unfortunately this had changed, and I was told that if I wanted to go to Antarctica in the future that I’d need to re-apply and go through the rigorous selection process again. In terms of Antarctica, I was back to square one. This of course was a huge blow and I felt absolutely devastated.

Now, despite my research I still knew very little about ME. It seems there was no such thing as a ‘ME specialist’, well not according to my GP. So I went back to Google. I found a doctor who apparently specialised in ME who worked at a private hospital in Edinburgh, I made an appointment. I saw him in early-April and I can tell you that it was a waste of time and a waste of money. He did confirm my diagnosis, but he had no information, no words of wisdom, no advice. He did however tell me that I’d be better within a year. You’ll probably have figured out that he was quite wrong about that.

One of the better things that happened around this time was my discovery of a local support group, Edinburgh ME Self-Help Group (edmesh). What would I do without edmesh! The support I have received from this group of wonderful people has been invaluable and I have made some really good friends. It was through this group that I heard about another doctor in Edinburgh who was knowledgeable about ME, he was (bizarrely) based in the Infectious Diseases Department at the Western General Hospital in Edinburgh. I asked my GP for a referral and she obliged.

In the meantime I managed to break my foot. It happened one evening when a friend was picking me up to take me shopping. Now, ME affects my balance and it causes me to become easily disorientated. I was looking for her car outside my flat and I stumbled, it seemed a very minor stumble at the time, I didn’t fall, but my foot was in absolute agony. I realised there was no way I could walk around a shop so she came up to my flat for a cup of tea instead, as I sat with a bag of frozen broad beans on my sore foot (the only thing in my freezer I didn’t mind sacrificing). It wasn’t until she left that the most impressive bruise of my life appeared on my foot. I called NHS 24 and I was told to go to A&E, an x-ray confirmed I’d broken my 5th metatarsal bone on my right foot. I was discharged with a big black medical boot and very stylish NHS walking stick. I don’t think it’s unconnected that before ME I had never broken a bone, and this was my second bone break, having also broken a toe in November, also due to my ME disorientation/lack of balance.

I saw the ME/Infectious Diseases doctor at the Western General in mid-May. I suppose, being honest, he didn’t really have much in the way of new or useful information for me, but, he listened to me. He gave me an hour and a half to talk. I don’t think I can put into words how good it felt to finally have a medical professional with a knowledge of ME actually listen to me, and believe me, to show me understanding and compassion. We went through my entire medical, and life history. We also bonded over a love of Icelandic music! He too confirmed my diagnosis of ME. All he could have suggested was that I attend the Astley Ainslie ME Service, which I had already been referred to so there was really nothing more he could do. But he helped me enormously, like I said, he was the first example of a doctor who truly believed me and who acknowledged what a devastating and life-changing illness ME is. I really don’t think anyone can understand the importance of this, not until you’ve been there yourself. He also spoke in depth about why this might have happened. No one knows the cause of ME, so it’s only ever guess work as to why a person gets this illness. For some it’s a bit more obvious, like an infection, or a flu that never goes away. But, this is what he suspected to possibly be the reason for me. Basically he thought it could be a combination of various factors…the bladder symptoms could have been the catalyst, that of course then triggered a lot of anxiety and stress, in regards to Antarctica. There were the unnecessary antibiotics I was prescribed when my bladder symptoms began. There was the massive emotional trauma of having to pull out of Antarctica. The contraceptive pill and the coil both caused me to relapse, so there is definitely a link there. I was under considerable stress with work, both with my everyday work stress, I was leaving work each day in a state of panic, and of course I was incredibly anxious about whether I would be granted unpaid leave for Antarctica or not, and it dragged on all summer. I also had that day volunteering at Loch Tay and the undeniable impact that that had on my bladder symptoms. Stress and anxiety cannot cause ME, but they do exacerbate it. It’s so hard to know how or why exactly this happened. Was the bladder the catalyst? Was it a coincidence? Would I have deteriorated into full-blown ME without any work stress? Would I still have developed ME if Antarctica had never been in the picture? I don’t imagine I’ll ever know.

It was mid-June when I started my first of ten sessions at Astley Ainslie Hospital. The doctor I saw was a psychologist. To be perfectly clear, this is not because ME is a psychological illness, it is not. This doctor was not there to cure me, he was there to help me through this new diagnosis, to help me understand how to manage ME and basically to support me through this massive life changing event. I saw him roughly once a month until my ten appointments were used up (June 2015 – April 2016). I found the service incredibly helpful. It was almost like I was attending one on one tutoring on the subject of ‘how to live with ME’. Having someone to speak to every month who truly understood the illness, and who fully understood the impact that this devastating illness has on a person’s life was incredibly helpful, it’s a great shame that the service doesn’t have the funding to offer more than ten sessions.

Now, I had hoped that I wouldn’t have to start claiming benefits, but my sick pay was due to come to an end and I needed an income. Due to my job I already knew how awful the process of applying for benefits in the UK is, I have supported many people through the process. But my god, I had no idea until it was me just how bewildering, stressful and inhumane the process actually is. Long story short, there were many tears, panic attacks, periods of utter rage, lots of forms to fill out, phone calls with incompetent DWP (Department for Work and Pensions) staff, letters from the DWP that didn’t make sense, exclamations of “I’m giving up, I can live on no money!” and more tears…but I do now receive contribution based ESA (employment and support allowance). I receive contribution based ESA because I have paid enough national insurance contributions, otherwise I would be on income related ESA. Within ESA you get placed either in the support group or the work related activity group (WRAG). WRAG is for claimants who the DWP consider will be capable of work at some time in the future and who they consider are capable of taking steps towards moving into work, and they are sent to various ‘work related activities’. The support group is for claimants who the DWP consider to have such severe health problems that there is no current prospect of their being able to undertake work or work-related activities. I am in the support group. My benefits journey continues to be rocky, the intimidating and often completely unnecessary letters are frequent and always result in me having to phone them to ask what the heck the letter means. They have accused me of doing ‘too much voluntary work’, I don’t do any voluntary work. They can demand copies of my bank statements whenever they want. And at any point they can send me renewal forms, and I’ll have to go through the process all over again, but I have no idea when that will be, could be tomorrow, could be in three years. I can never fully relax, and that, I believe, is just what they want.

In the summer of 2015 I made a big change and I moved out of Edinburgh back to my hometown of Peebles in the Scottish Borders. My benefits weren’t/aren’t enough to live on and pay my mortgage, so by moving out and renting out my flat I would have some additional income. It was also the only way I was able to save my flat and not have to sell it. I now live in a very tiny but charming cottage and my mum, who does a lot to care for me, is much closer. I’m also less isolated here, thanks to not having 98 stairs to contend with (my flat was on the top/5th floor of a tenement, and there was no lift).

In February 2016 I decided to start seeing a counsellor. I only had two appointments left with the ME Service at Astley Ainslie Hospital and I knew I would miss having someone to speak to. Someone completely non-judgemental and empathetic. I still see her once a week and she is very handily only a very short walk from my cottage. By overlapping counselling with Astley Ainslie it meant I had already established a relationship with my counsellor/therapist when the Astley Ainslie sessions ended, and I felt less abandoned.

My move to Peebles meant a new GP. And this is the reason I may never be able to leave Peebles, unless my GP would be willing to relocate her family and follow me wherever I go. She is the best GP I have ever had. A good GP when you have a chronic illness is so incredibly important. I can go to my GP with a new symptom and she won’t brush it off as being ‘part and parcel’ of my ME, like my previous GP did. She can’t cure my ME, she admits that the NHS is ‘crap when it comes to ME’, but she can, and she does, take each and every one of my symptoms seriously. She is investigating my symptoms one by one, to ensure we aren’t missing anything that could be treatable. We started with my gynaecological symptoms. She referred me to gynaecology, my first appointment was mid-March 2016. Now, remember back to March 2015, I was refused a laparoscopy, because according to my GP and that gynaecologist “those symptoms are just due to your ME”. Well, my new gynaecologist did book me in for a diagnostic laparoscopy, which happened in June (the same day of the disastrous Brexit result) and guess what, I have endometriosis. Fancy that, I, the patient, was right. The treatment for endometriosis, when taking into account my ME, is very tricky. So my appointments with the gynaecologist are ongoing, while we think about the best course of action.

You may also remember that my ME began with bladder symptoms. These symptoms were ongoing, so the private urologist I had seen in the summer of 2014 referred me to his NHS clinic. I would have the continuity of seeing the same doctor, but without the bills. I saw him again a couple of times but unfortunately nothing much came of it. At my last appointment he said he would see me again in 6 months, that was in July 2015 and I’ve been waiting over a year and a half for that appointment. So I recently decided, for various reasons, to withdraw myself from his waiting list. My current GP is going to refer me to a different urologist after I have the gynae stuff sorted out. One thing at a time.

Round about mid-2016 I heard about a medication that sounded promising, Low Dose Naltrexone (LDN). Naltrexone in its ‘usual’ dosage of 50 – 300mg is used in the management of alcohol and opioid dependence. However, someone, somewhere, some time ago discovered that many autoimmune diseases, including ME, respond positively to Naltrexone at a very low dosage of 0.5mg – 4.5mg. So, I did my research, I read the anecdotes and I spoke to fellow ME sufferers who take LDN. My main concern was if the benefits would outweigh any side effects. Due to my propensity for side effects (a ME thing), I usually start a new medication with a great deal of trepidation. The side effects of LDN however seemed to be minimal, and the benefits for many are phenomenal. I decided to give it a shot. Unfortunately LDN is not available on the NHS, only a few, very broad minded, and well informed doctors will prescribe it. My GP is great, she wanted to prescribe it but couldn’t, practice regulations or something. So I get it privately from a clinic in Glasgow, thankfully they do their consultations over the phone. Some people, often it depends what illness they’re taking it for, can start immediately at 4.5mg, others, especially ME folk, are advised to start low and increase the dosage very slowly. It’s not uncommon for each increase in dosage to result in a period of increased symptoms. I’ve been taking LDN since August 2016, not even 8 months ago, and I’m still only at 1.5mg. So far when I increase my dosage I’ve had to drop back down, then try again. It could be years before I reach 4.5mg. I could also find that my optimum dosage is lower than 4.5mg. It’s a slow process of trial and error, even after finding what I feel is my optimum dosage, I will need to give it a year or so at that dosage before I can say with any confidence whether it’s working for me or not. I take it in liquid form with a 5ml syringe (not a needley syringe) so adjusting the dosage is easy, I drop it in a glass of water and gulp it down while trying to ignore the awful taste. So far I haven’t noticed any positive effects on my ME, however, my endometriosis symptoms have improved somewhat since I started LDN, enough that I am putting off any further treatment, to give the LDN more time. For information on how LDN works click here.

I’ve written in previous posts about my tonsillitis. While the tonsillitis has gone, I think, it did leave behind a lump in my left tonsil. Because of this the ENT doctor wanted to remove my left tonsil so it can be biopsied. I asked him if he could please remove both while he’s in there, after all I did have tonsillitis in both tonsils originally, so it makes sense to get rid of both of them. At least I’ll know with certainty that future sore throats cannot be tonsillitis. My tonsillectomy is happening a week tomorrow, eek!

I had a referral to the pain clinic at the Borders General Hospital (BGH) recently. Unfortunately, despite the doctor being really nice, it wasn’t of much help. All he could offer me was a pain management course, attending once a week for ten weeks, and it focuses a lot on exercise. Thankfully the doctor I saw understood how inappropriate this would be for me, with ME, so that was that. I’m still on the hunt for the perfect pain relief. The side effects are too severe from most that I have tried, and due to being on LDN I can’t take any opiate based medications (my GP said she would make an exception for morphine however, if I need it after my tonsil op, but I will have to stop taking LDN while on the morphine). In the meantime I have paracetamol, ibuprofen and ibuprofen with lysine, none of them erase my pain, but they can offer some mild relief with no side effects.

For a while I thought I might also have Postural Tachycardia Syndrome (PoTS), common in combination with ME. So I saw a neurovascular doctor recently and it seems actually that PoTS is unlikely. It’s probable that my PoTS-like symptoms are in fact ME symptoms, the erratic heart rate, dizziness, lightheadedness and the almost always feeling on the verge of fainting. One of the key characteristics of PoTS is that the dizziness is relieved by lying down, which is not the case with me. My dizziness is becoming worse and is constant, possibly aggravated by the withdrawal of one of my medications. Something to add to my list of symptoms that needs further investigation.

We’re pretty much up to the present day now. I think after I have fully recovered from my tonsillectomy it will be back to the bladder investigation, and a referral to a new urologist. I’m sure that will involve some unpleasant and invasive stuff. I’ll keep you posted!

Post Seven. Symptoms.

This is purely an informational post. I sometimes share articles about ME on Facebook and Twitter, but I can’t be sure anyone reads them, very few people at least let me know that they’ve read them. So occasionally I’m going to write a blog post highlighting a particular article that I want to share, in the hope it will reach more people.

So, for anyone who thinks ME is nothing more than ‘being tired’, this is for you! Below are the symptoms a person must have in order to be diagnosed with ME. I have taken this information from the ME International Consensus Criteria, published in the Journal of Internal Medicine 2011. (The ME International Consensus Criteria is an update of the Canadian Consensus Criteria, the proposed clinical criteria for ME published in 2003.)

I will highlight with a tick if I have one or more symptom from each category. I also experience symptoms not listed here. For example, for women, ME can affect the menstrual cycle. I won’t go into each and every way this affects me, but it’s only since I’ve had ME that I experience painful ovulation. I can tell exactly when I ovulate, and from which ovary, which, if it wasn’t so painful, would be pretty cool!

Click here to view the original article. Myalgic Encephalomyelitis: International Consensus Criteria, Journal of Internal Medicine, first published 22 August 2011.

Myalgic Encephalomyelitis: International Consensus Criteria

Introduction

Myalgic encephalomyelitis (ME), also referred to in literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and benefit both the physician and patient in the clinical setting as well as clinical researchers.

Using ‘fatigue’ as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has ‘chronic fatigue’ attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day. The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion and with reduced ability to undertake the same activity within the same or several days.

Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.

A patient will meet the criteria for postexertional neuroimmune exhaustion (A).

At least one symptom from three neurological impairment categories (B).

At least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C).

At least one symptom from energy metabolism/transport impairments (D).

A. Postexertional neuroimmune exhaustion: compulsory

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

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. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms. ✔

3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days. ✔

4. Recovery period is prolonged, usually taking 24 h 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. ✔

Operational notes: For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level. Mild (an approximate 50% reduction in pre-illness activity level), moderate (mostly housebound), severe (mostly bedridden) or very severe (totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately.Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.

B. Neurological impairments: At least one symptom from three of the following four symptom categories

1. Neurocognitive impairments

a. Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia ✔

b. Short-term memory loss:e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory ✔

2. Pain

a. Headaches:e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches ✔

b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is noninflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain ✔

3. Sleep disturbance

a. Disturbed sleep patterns:e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares ✔

b. Unrefreshed sleep:e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness ✔

4. Neurosensory, perceptual and motor disturbances

a. Neurosensory and perceptual:e.g. inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception ✔

b. Motor:e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia ✔

Notes: Neurocognitive impairments, reported or observed, become more pronounced with fatigue. Overload phenomena may be evident when two tasks are performed simultaneously. Abnormal accommodation responses of the pupils are common.Sleep disturbances are typically expressed by prolonged sleep, sometimes extreme, in the acute phase and often evolve into marked sleep reversal in the chronic stage.Motor disturbances may not be evident in mild or moderate cases but abnormal tandem gait and positive Romberg test may be observed in severe cases.

C. Immune, gastro-intestinal and genitourinary Impairments: At least one symptom from three of the following five symptom categories

1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion.e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation ✔

2. Susceptibility to viral infections with prolonged recovery periods ✔ (a new symptom for me, my prolonged tonsillitis, 7 weeks and counting…)

3. Gastro-intestinal tract:e.g. nausea, abdominal pain, bloating, irritable bowel syndrome ✔

4. Genitourinary: e.g. urinary urgency or frequency, nocturia ✔

5. Sensitivities to food, medications, odours or chemicals ✔

Notes: Sore throat, tender lymph nodes, and flu-like symptoms obviously are not specific to ME but their activation in reaction to exertion is abnormal. The throat may feel sore, dry and scratchy. Faucial injection and crimson crescents may be seen in the tonsillar fossae, which are an indication of immune activation.

D. Energy production/transportation impairments: At least one symptom

1. Cardiovascular:e.g. inability to tolerate an upright position – orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness ✔

2. Respiratory:e.g. air hunger, laboured breathing, fatigue of chest wall muscles ✔

3. Loss of thermostatic stability:e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities ✔

4. Intolerance of extremes of temperature ✔

Notes: Orthostatic intolerance may be delayed by several minutes. Patients who have orthostatic intolerance may exhibit mottling of extremities, extreme pallor or Raynaud’s Phenomenon. In the chronic phase, moons of finger nails may recede.

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So, does this help you non-believers?