ME and the truth: The reality of Myalgic Encephalomyelitis

In July 2017, I wrote a post entitled ME and me: Living with Myalgic Encephalomyelitis, in which I talked about my experience of life with an often misunderstood and misrepresented chronic medical condition. Since then, I’ve had so much wonderful feedback resulting from that post, and one random person telling me that I can be cured with feng shui…but there’s always one, eh? This post is a follow-up of sorts, an attempt to represent the condition less in terms of my personal experience (although it’s impossible to talk about it without referring to my own life) and more in terms of a medical explanation.

My faces

The pictures above do not depict me in separate stages of the illness over a number of months or years. They depict me a couple of days apart and they are both completely normal versions of me. I’m not wearing any make-up in either picture. When I am wearing make-up, I can do a fairly convincing impression of a healthy person. That’s how I look to people who only see me on a totally amazing day when I’ve been able to go out.

The photo on the left is what my husband, my parents and a small number of my close friends see. I haven’t done anything with my hair. I’m actually still in my pyjamas because I was physically incapable of having a shower or getting dressed that day. I have huge dark circles under my eyes and everything looks a bit sunken, but I’m still smiling and I could be a healthy person having a rough day. Or a healthy person who got punched in the face a bunch of times.

The photo on the right was taken this morning. I couldn’t hold my head up or keep my eyes open for more than a few seconds. I just about managed to hold my phone for long enough to take the photo. It’s a warm sunny day and I’m wearing layers of clothes and I’m wrapped in blanket because I feel like I have ice in my bones. My skin is a mess, my face is puffy and swollen because I’m having an allergic reaction to life, and I straight up look like crap. My husband is the only person who sees my like this because when I’m this ill, I’m not able to go anywhere or be around other people as it’s simply too exhausting, strenuous and overwhelming to be possible.

Why I’m writing this post right now

I wanted to write it while I was feeling absolutely terrible so that I would stand a better chance of resisting the urge to liberally douse it in optimism and positivity. Obviously I’m not at my worst this very second, but I still can’t get up or walk by myself, I’m propped up on cushions in a chair because I can’t sit up, I feel like my skeleton is climbing out of my body, my head is pounding from having a back lit screen in front of me, and I’m getting so out of breath from the exertion of typing that I can hardly breathe or see straight and the world is spinning. It has taken me almost three hours so far to write this and I’m nowhere near done yet.

What inspired this post

Recently, a couple of people have directed me to articles in the mainstream media about a member of a highly successful rock band discussing his ‘battle’ with ME. On one hand, I am so glad ME is actually being talked about in the media in terms other than “a bunch of people are tired, go for a run and smile more, you lazy wastes of space” but on the other hand, it’s so deeply frustrated that the writers of these articles seem to go out of their way to tick both the Inspirational Disabled Person box and the Convenient Recovery Narrative box to the exclusion of offering representative information about the condition itself and the majority of people who live with it.

For this lazy journalism, I’m not blaming the musician who spoke out and I in no way intend to diminish his resilience or achievements, but I’m annoyed that the only story being told is of someone who had ME but was still able to be in a successful band that recorded numerous albums and toured the world over the course of a couple of decades.

My blog is just one tiny corner of the internet, but it’s my tiny corner and I want to take this opportunity to share some information about what ME actually is. Tiredness, or ‘chronic fatigue’ (seriously, typing or even reading those words makes my blood boil), is only one of many symptoms and it’s often not even the most severe.

The medical reference I used

The information I’ve shared here is based on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (commonly referred to as the Canadian Consensus Criteria or the Canadian Definition as it was compiled by world experts selected by Health Canada). I’ve done my best to explain things in my own words where possible so as not to simply copy and paste someone else’s work. The only times I’ve quoted directly are when specific medical terms were used or when there was no alternative way to state something without potentially changing an important meaning, and I’ve made it clear where I’ve done that.

I sincerely advise you to read the original document here*, (although the last few pages seem to be missing in every version I can find and I’m not sure why) or the slightly less dry and heavy, slightly more accessible, version by two of the original authors, here**.

A quick disclaimer and a request

Before I go any further, I want to make it super clear that I am not a doctor or any other kind of medical professional and I am absolutely not offering medical advice of any kind, neither will I do that for anyone who comments here or otherwise contacts me. Self-diagnosis with medical conditions is rarely a good idea anyway. Go see your doctor. If they’re totally useless and tell you to eat more blueberries and start the day with a smile, go see another doctor who didn’t get their medical license out of a cereal packet.

Also, please DO NOT under any circumstances contact me or comment here with any ‘cures’, ‘advice’, links to that one article you read somewhere, or tales of your cousin’s best friend’s next door neighbour who had ME that they cured by drinking green tea and now they do triathlons. I’ve lived with this for almost a decade and a half. Believe me, I’ve read ALL about the non-cures, unfounded advice, ‘news’ copied from press releases about since-debunked studies, and ‘hallelujah, it’s a miracle, thank god for coconut oil and talking about sadfeels’ anecdotal wordspew.

Thank you 🙂

What ME is

Quoting from the Canadian Consensus, ME is a “severe systemic, acquired illness that can be debilitating. It manifests symptoms predominantly based on neurological, immunological and endocrinological dysfunction” and onset often follows a viral infection. The Canadian Consensus also explains that “before acquiring the illness most patients were healthy, leading full and active lifestyles.” This is important to note because there’s a HUGE difference between someone living a sedentary lifestyle having difficulty performing physical activity due to being out of shape, and someone who is fit, healthy and strong suddenly being unable to sit up unaided.

Someone with ME will meet the following criteria…

Fatigue
This is NOT the same as tiredness or even exhaustion. Everyone experiences those. In fact, most people experience some level of fatigue when they’re totally wiped out. The point is, they rest and they recover. For people with ME, fatigue refers to a (quoting from the Canadian Consensus, emphasis my own) “significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.”

Post-exertional malaise
Again, this is not a normal level of tiredness after performing activity. Also, the word malaise when encountered in a non-medical context often suggests an emotional state, which further contributes to misunderstanding. In the case of an ME diagnosis, it refers to an unusual loss of both mental and physical stamina, as well as an almost immediate loss of physical strength and cognitive function, with additional pain and the worsening of other symptoms. Recovery (not back-to-full-health recovery, but rather back-to-your-own-normal-state recovery) from this is abnormally slow. In fact, when you have ME your body will actually respond differently (often profoundly negatively) to exercise compared to a healthy person. This is explained in detail in the second document linked in the medical reference section above.

Sleep dysfunction
Most people will experience some sort of sleep rhythm issues – insomnia, hypersomnia etc – at some point in their lives. Again, this symptom does not refer to normal, expected and/or temporary problems with an obvious cause. With ME, sleep is not only disturbed in terms of rhythm but is also never refreshing or restorative, meaning that ‘a good night’s sleep’ doesn’t really happen, and if it does, it doesn’t make you feel better.

Pain
This is not ‘ooh, my leg is a bit sore today’ pain or ‘I have a headache’ pain. As a symptom of ME, it refers to significant and widespread pain which often cannot be controlled adequately, or at all, with treatment. Pain is very difficult to quantify, so I’m going to throw a bit of personal explanation into the middle of all the medical stuff to illustrate the experience as best I can from the perspective of someone who has the condition. The pain I live with varies from a general, persistent (i.e. it never goes away, ever) ache in my joints and muscles, to a physical sensation so overwhelmingly severe that it causes me to throw up and pass out.

Someone with ME will have two or more of the following neurological/cognitive symptoms…

Difficulty concentrating and processing information, confusion and disorientation, short-term memory problems, inability to recall familiar words, sensory and perceptual disturbances, spatial instability, and inability to focus vision.

Many patients also experience muscle weakness, ataxia (difficulty with coordination, balance and speech) and fasciculations (spontaneous contractions in muscle fibres, causing twitching under the skin), as well as ‘overload phenomena’ like hypersensitivity to light and sound, and emotional overload that causes intense anxiety.

Patients with ME will have at least one symptom from two of the following categories…

The following three categories of symptoms have been quoted directly from the original Canadian Consensus document as they are mainly medical terms which cannot be reworded without risking inaccuracy.

Autonomic manifestations
Orthostatic intolerance–neurally mediated hypotenstion (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension; light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnea.

Neuroendocrine manifestations
Loss of thermostatic stability – subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change–anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with stress.

Immune manifestations
Tender lymph nodes, recurrent sore throat, recurrent flu-like symptoms, general malaise. (My own note: again, malaise refers to a physical state, not an emotional state)

While the onset of ME may be either sudden or gradual, it is still distinct (as in, you can point to a time and say, “yes, this is when I got sick”), and the condition must persist for at least six months, with symptoms beginning or becoming markedly worse following onset. Symptoms tend to be experienced in clusters and are likely to fluctuate and change over time, so a patient may not have every single symptom, all day, every day, and symptoms may worsen seemingly spontaneously and unpredictably as well as directly following certain activities and experiences.

What ME is not

It’s worth nothing that an ME diagnosis means that other potential causes of the symptoms have been ruled out. The Canadian Consensus lists diseases and conditions that may cause symptoms similar to ME and as many people with ME will tell you, being tested for all those things to rule them out is absolutely terrifying. When I was diagnosed with ME, my first thought was, “Well, at least I’m not going to die yet.”

The Canadian Consensus also clearly states that fatigue ON ITS OWN, even if unexplained, it NOT enough to result in a diagnosis of ME. This is why referring to ME as simply ‘chronic fatigue’ is wildly misleading and dangerous for patients who are living with a host of complex and debilitating symptoms which affect every organ and system in their body, sometimes for years, sometimes forever.

I’ve quoted the next paragraph directly from the original document too, as it’s vitally important and often misunderstood. Seriously, this is super necessary to understand.

“ME/CFS is not synonymous with depression or other psychiatric illnesses. The belief by some that they are the same has caused much confusion in the past, and inappropriate treatment”

The reason this is important has nothing to do with differentiating between physical and mental conditions in terms of severity, potential debilitation, or emotional, social or occupational impact. It’s all about those last two words – inappropriate treatment. In the past, and currently in some countries and by some medical professionals (and a bunch of snake oil pedlars), ‘treatment’ for ME involves the victim-blaming assumption that the patient is simply thinking wrongly and when they learn to think properly, all symptoms will vanish. This is so painfully, obviously untrue, but still it persists as a school of thought and it still destroys lives.

Another problem with wrongly assuming that ME is a psychosocial or behavioural condition is that many patients have been forced to do, or at least attempt, physical activity (even during the acute stages of the illness) at a level which is not only difficult or impossible, but is actually dangerous. This can have profoundly negative effects, from immediately worsening the patient’s health to impacting any realistic opportunity for even partial recovery.

Understandably, living with a persistent, debilitating physiological condition from which you may never recover can result in mental health issues, especially if you are repeatedly blamed for your condition or have your experiences trivialised or outright denied by the people and systems that are supposed to be in place to help and support you.

The more you hear, “think positively, look after yourself and you will get better” while doing your best to do all those things and still not getting better, the harder it is to keep on living. Some of us manage it. Some of us spend years at the cliff edge of suicide. Some fall or jump or are pushed. Never believe for a moment that ME has no body count. It does.

In conclusion

If you’ve read this far, you are a beautiful shining star and I appreciate your presence and your interest so much. If you want to be an even more wonderful ally, here are some things you can do.

  • When you hear people talking about ME as simply ‘chronic fatigue’ or spreading inaccurate information about the condition or potential treatments, please politely correct them.
  • When you encounter stories that tell only of recovery, please politely let people know that those stories are not representative, that less than 10% of adults with ME ever return to pre-illness levels of ability and activity, and that relapses are common.
  • When you see someone with ME looking healthy and happy, please remember the photos at the top of this post. Do not assume they are cured or even remotely better. Do not take their appearance as evidence that they are not sick or disabled. Remember that you see only the best days and those are a million miles from the worst.

To end on a note that I hope adequately expresses the severity of this illness, I’m going to quote the Canadian Consensus one more time.

“ME is actually more debilitating than most other medical problems in the world, including patients undergoing chemotherapy, and HIV patients (until about two weeks before death)”

If you found this post useful and you’d like to buy me a coffee, you can do that here. Thank you for reading ❤

REFERENCES

* Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols
Published in Journal of Chronic Fatigue Syndrome, Vol. 11(1) 2003 by The Haworth Press, Inc.
Bruce M. Carruthers, MD, CM, FRCP(C); Anil Kumar Jain, BSc, MD; Kenny L. De Meirleir, MD, PhD; Daniel L. Peterson, MD; Nancy G. Klimas, MD; A. Martin Lerner, MD, PC, MACP; Alison C. Bested, MD, FRCP(C); Pierre Flor-Henry, MB, ChB, MD, Acad DPM, FRC, CSPQ; Pradip Joshi, BM, MD, FRCP(C); A. C. Peter Powles, MRACP, FRACP, FRCP(C), ABSM; Jeffrey A. Sherkey, MD, CCFP(C); Marjorie I. van de Sande, BEd, Grad Dip Ed

** Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners
An Overview of the Canadian Consensus Document
Bruce M. Carruthers; Marjorie I. van de Sande

13 thoughts on “ME and the truth: The reality of Myalgic Encephalomyelitis

  1. Thank you for this informative, honest and well-constructed piece. We live in hope. Hope to be heard and believed, hope for improved biomedical research to find adequate treatments and hope things will improve for every sufferer. It’s a shame the Hope we live in isn’t very big on the map yet. X

    Liked by 3 people

  2. Thanks for writing this. Is there any research or insight into who is most likely to develop ME, or is it something that can strike anyone at any stage of life?

    Liked by 1 person

    1. It can happen to anyone at any time of life. It often follows a serious viral infection and as such has been seen to sometimes occur in epidemics (following viral epidemics) but beyond that no specific or definitive cause is currently known.

      Liked by 1 person

    1. I’ve been wanting to write something like this for ages but I find it really hard to go into detail about being sick because I hate thinking about it that deeply. Posting this feels like a weight off my shoulders though ❤

      Like

      1. I think it’s so very brave that you shared those photos. It’s something so personal and not something you’d normally share. For me, it’s very recognisable. I’m so glad that for you it’s a weight off your shoulders. That’s what matters so much. ❤

        Liked by 1 person

        1. I’m strangely OK with the photos. I figure sometimes people look great and sometimes people look terrible and both are as alright as each other. It’s more the researching and writing bit, having to think in minute detail about all that stuff when I spend most of my time trying to ignore it or at least acknowledge it and let it go.

          Liked by 1 person

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