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Christian Godbout, a person with ME, Speaks out on the history of ME/CFS

Christian Godbout, a person with ME, speaks out on the history of ME/CFS

and why we must amplify all Voices of ME

A history of neglect
Myalgic encephalomyelitis and its relationship with medicine

By Christian Godbout

Only forty years ago, the name “chronic fatigue syndrome” did not even exist. The thing, however, existed nonetheless and plagued the lives of countless people under the name, among others, of myalgic encephalomyelitis – ME. It plagued lives then and still plagues lives today. Unaltered. Always coming with the same sufferings.

This text would like to address the medical field entirely, from medical and research students to policy makers.

It is also written for anyone affected by this condition, which is too often confronted with harmful ignorance. I will discuss a few examples.

But first, let’s consider this scenario. A scenario that makes no sense. Imagine a world-renowned biomedical researcher with fifty years of experience in the field, having received numerous prizes and Lifetime Achievement Awards, and whose son falls so seriously ill that he becomes permanently bedridden.

Now imagine that, despite all his knowledge and impressive background, this researcher has virtually no clue of what is really going on in his son’s body.

That was the situation of biochemist and geneticist Ronald W. Davis in the early 2010s when his son fell into severe ME.

Consider this aberration: a disease capable of ending the professional and social life and all leisures of those it afflicts, who leaves them homebound if not bedbound indefinitely, a disease whose most severe forms have been compared to late stage AIDS, – but whose very existence is hardly taught in medicine. How crazy is that?

A disease hidden from sight

This inhuman scenario of a disease that is both terrible, yet neglected, surely has several causes, including government decisions to favour certain areas of health and turn a blind eye to others. But I will focus here on another cause, which comes from the very nature of this disease. Understanding why medicine fails to place ME under its radar also means in some way understanding a little about ME itself.

ME is often associated with so-called “invisible” diseases, but it could be said differently: ME is not so much an invisible disease as an unwitnessed disease.  The most affected patients are too disabled to go to  clinics or to sustain any social interaction, and therefore hardly anyone sees them. But one quick look at them and anyone would see they are visibly very sick.

And the less severely affected do not seem so sick at first sight, their relatives can see them, lying on a couch, sometimes seated, they can talk, laugh, their life seems almost normal. And yet these relatives  are in presence of something seriously abnormal,  but which remains latent: if the patient got up and walked to the corner of the street a few hundred yards away, his or her physical condition would then deteriorate, for days. Or worse: the conversation the patient is having with you couldn’t take place while simply standing  without the patient suffering the same consequences.

One can see these patients, but without seeing all they are not doing, all  they cannot do. Nor the price they pay if ever they risk it.

Ditto for their appointment with doctors: the latter are never there to witness the subsequent impact of these appointments on their health. These doctors, like all the others, will only have seen a person on temporary adrenaline.

The thing at the heart of this disease that so to speak dooms it to go unnoticed is called “post-exertional malaise.” The name itself already hints at this other cause of underestimation of ME: it manifests itself at its worst “post”, it peaks during an “after”, there is always a lag between the exertion “x”  of patients and   the time   their  health worsens. A  worsening clearly visible  but which almost no one will witness.

It is important to define these terms well because in themselves the words “post-exertional malaise” could evoke nothing more than a person out of breath some fifteen minutes after having done a little jogging. And that would lead us far away from reality… which could rather resemble someone who would spend days in bed after a family visit.

Eventually it may be someone who never recovers from a given exertion too many and stays bedridden for good.

Thus “exertion” here really doesn’t mean playing sports. It can be as negligible as talking on the phone, or even less; “post” does not mean lasting a few hours, but a few days, or much longer; and “malaise” does not refer to a local malaise such as muscle pain, but to a general and profound malaise, similar to a feverish state or feeling poisoned. Without going into a detailed description, it is important at the very least to understand that this “malaise” is painful to endure, and renders invalid. Body and mind.

Lost in the limbo of fatigue

One wishes that the task of making ME better understood had merely consisted all this time of clearly characterizing this post-exertional malaise. Unfortunately the task was – and is – much more difficult.

A most frustrating paradox is that this essential characteristic of ME happens to be precisely what medicine constantly fails to grasp. Post-exertional malaise is the very thing that ruins a patient’s active life, and the very thing that medicine ignores. A paradox with serious consequences.

Instead of a proper recognition of this dreadful symptom, the very little that medicine has witnessed with ME was subject to three major errors: 1- this very little was once reconceptualized in terms of “chronic fatigue”; then 2- it was either attributed to the patient, or 3- interpreted in a psychogenic way.

To gauge the extent of the first error, one needs only to consider this: fatigue is a trait universally present in healthy humans, post-exertional malaise is a trait universally absent in healthy humans. No healthy human deteriorates  following exertion, there is no such thing.

So we gave the name of something that everyone knows, to something that no one knows. A complete lack of medical rigour that trivializes a serious condition.

Most of the doctors on the American committee that coined the term “chronic fatigue syndrome” in the 1980s had not seen a single one of the original patients, and most of them later disappeared from the field of this disease, except for one, Anthony Komaroff, who publicly admitted how much this name was a mistake and apologized for it.

Parenthesis: in certain countries we sometimes read “ME, formerly called chronic fatigue syndrome, …” but it’s the other way around of course. “ME” was introduced thirty years earlier in England in the 1950s, by an infectious disease specialist called Melvin Ramsay (who had spent his life with these patients), in 1969 the WHO officially recognized ME, as a neurological disease, – and twenty years later the US enters the scene and throws this disease in limbo.

Social prejudice, clinical prejudice

The second error, namely attributing the disease to the patients, to their habits, is as much a prejudice an ordinary person can express as that which underlies the largest clinical trial ever carried out in the field of ME, the PACE trial, which has influenced official documents and recommendations to physicians all over the world.

This trial presupposed that ME patients perpetuate their illness by deconditioning themselves through avoiding activity because they believe themselves incapable of it, but this belief would be erroneous; the treatment plan is then to change their beliefs with cognitive therapy and to recondition them with graded exercise. Easy as one-two-three… A preconceived idea so tenacious and widespread that it may be useful to know some of the staggering undersides of this clinical trial.

First of all, the trial was a complete failure. The vast majority of the approximately 600 participants did not benefit from the aforementioned treatments. But the authors manipulated the results to make them appear as success, by having revised downwards one of the recovery criteria so much that patients could meet it even if their condition had not improved during the treatments. Needless to say, such a contradiction invalidates the authors’ conclusions.  The Court itself had to intervene to force them to make available information which they refused to disclose and which jeopardized their claim to success.

Why did these authors cling to their results? By way of answer, I’ll simply juxtapose two facts: the Pace Trial was financed in part by the UK government agency which controls invalidity benefits, the Department for Work and Pensions, and the manipulated results would have had the effect of minimizing the disabling nature of ME. To top it off, some of the authors also had ties to insurance companies.

A scandalous chapter in the history of ME, which hopefully will once and for all fade away, together with the idea that patients are the architects of their own misfortune by being poor judges of their physical capabilities. An idea that adds insult to injury.

No one can self-inflict such health problems with mere false beliefs and avoidant behaviours.

And no one wakes up one fine morning with a sudden irrational fear of activity out of nowhere. If  ME patients avoid activity, it’s because they first experienced, repeatedly, that activity makes them sick. Their “belief” is absolutely correct. 

A default setting: psychologism

The third error: psychogenic suggestion, the fallback view of many doctors whenever patients’ blood tests return normal, and which consists of suggesting in this case that their symptoms might perhaps be caused by… depression? anxiety?… After all, a superficial look can easily confuse them: ME patients rarely go out and are often in bed, severe depression can very well look like that too.

This psychogenic suggestion – which is not far from magical thinking in that it postulates invisible causalities, unobservable with any test or scan – seems to forget that diseases as “physical” as Lou Gehrig’s disease or multiple sclerosis are also undetectable in blood tests.

These doctors probably don’t forget that. But are just not always inclined to take the patient’s physical complaint at face value.

Be that as it may,  this suggestion is a hypothesis that a doctor should be able to confirm or exclude easily, with just two short questions, one psychological, the other physiological.

Psychologically, the patients can be asked this simple question:

“What would you do if you regained your health?”

Typically, truly depressed patients will not quite know what to say, while ME patients will come up right away with an endless list of things they dream of doing.

On the physiological level, an even simpler question:

“How do you feel if you exercise?”

Depressed patients might say they feel a little better or feel nothing at all; ME patients will say that their condition deteriorates for days afterwards.

Never would one hear the opposite: a depressive patient who deteriorates and an ME patient who feels better.

The absence of a tonic effect of exercise, and on the contrary a deleterious effect, is a quasi infallible criterion for excluding primary mental illness and for including ME.

This differential diagnosis is elementary, a child’s play, and yet most doctors don’t know how to do it. Because they lack the basic notion of post-exertional malaise, that’s all. And all is there.

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These three major errors are preconceived ideas that circulate as much in doctors’ offices as in society at large. All three lead to a form of skepticism towards the physiological reality of ME.

Being skeptical of someone’s account of having such and such physical pain is one thing; but to doubt patients who recount having lost their active life and all that filled it, to doubt the very thing that robbed them of their former existence, is quite another, cruelly perverse. This disease isolates patients from the normal course of human life, and doubting their story only isolates them further.

And if ever this doubt goes so far as to suspect some “secondary gain” from the disease, then this truly looses sight of the all-obvious fact that the sum of losses suffered with this disease massively outweighs any benefit imagined by skeptics.

“First do no harm”

If patients are exasperated by these prejudices – thinking in terms of simple fatigue, deconditioning or psychological components – it’s not because they view those as not being  “real” illnesses or that it is some weakness to suffer from them. The reason is different and is clear:

It’s because all three lead to recommendations that are contraindicated for ME.

The treatment of fatigue includes exercise, the treatment of deconditioning includes exercise, the treatment of depression includes, in addition to medication, encouragements to patients to resume their activities and hobbies. Things which not only will not help ME but will worsen it.  Sometimes to a point of no return.

Recommending to an ME patient what one recommends to a depressed patient is a recipe for disaster. That’s the reason.

Most cases of severe ME have not fallen into a state of permanent bedboundness  overnight; they arrived there very often because they had not been well advised at the very beginning of their illness on what was happening to them.

The potential for deterioration of this disease is spectacular and its extreme forms defy comprehension. Patients fed by tube, living in the dark and for whom the mere sight of a human in the room makes them sink even deeper.

What’s outrageous here is that such dramatic deteriorations could have been avoided in many cases. And it’s not rocket science that would have been required from the doctor: simply knowing to tell a patient during the initial stage of the disease “Get rest, do not push and persist in your activities, reduce them and rest” – with this simple recommendation, the patient might be spared the worst outcome.

Instead, patients will usually be told to try to stay active as much as they can, and doctors who repeat this refrain, far from protecting patients, might on the contrary precipitate them in a nightmare of a life. A drama that could have been mitigated if only the doctor had had adequate knowledge of… post-exertional malaise…  I hope I have conveyed by now the importance of fully understanding this central symptom.

In recent years, patients have been less and less alone in making this message heard. The Centers for Disease Control and Prevention recently withdrew graded exercise recommendations for ME, the UK’s National Institute for Health and Care Excellence has also withdrawn them, and shortly before, the US Institute of Medicine had even proposed a new name for the disease intended to help doctors to never miss post-exertional malaise, by alluding to it in the name itself: “systemic exertion intolerance disease”.

However, this progress only dispels preconceived ideas with harmful consequences. We’re here at the stage of the basic Hippocratic motto to First do no harm,  certainly crucial but far from sufficient. There is still a lot to do for medicine to know exactly how to truly treat these patients.

In order for the research community to tackle the problem in a more concerted way, although still largely insufficient, it took far too exceptional circumstances: it took a researcher, of high reputation,  who witnessed this calamity, under an extreme form, with his own eyes, in his own house, in his own son’s room.

And I wouldn’t be surprised if Ronald W. Davis himself were underestimating ME prior to that. Underestimation of this disease is the norm. Including with the best-intentioned people. It is almost impossible for healthy people to guess by themselves the absurd extent of the limitations imposed by this disease. That too is a message I hope to get across here.

Medically abandoned for too long

Suicides are frequent among these patients. ME is a chronic assault that can break over time even the most resistant individuals.

A study published in 2015 entitled “The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)”, compared the impact of various diseases on the quality of life of patients. The authors compared diseases as serious as lung cancer, multiple sclerosis, chronic renal failure, rheumatoid arthritis, angina pectoris, schizophrenia, emphysema, bleeding ulcers, and others.

On the list of twenty diseases compared, the one with the lowest score, the one with the worst quality of life, – was ME.

Photo credit: Munchmuseet.

Imagine suffering from a disease that devastates a life more than those I have just mentioned.

Imagine suffering from it for 10 years, 20 years, 30 years…

and never having received adequate medical care.

Such is the fate of the majority of people who suffer from ME.

I urge medicine and its leaders to do everything possible to improve this fate.