The Concept of ME/CFS

Yes, agree that cognitive disturbances should be included as this symptom disables most people with ME/CFS.

 

Yes, I have slipped that in.

 

Thanks to all for excellent points.

 

I think this is well written.

I'd be interested in seeing if there will be a citation for this, showing how common it is, or that it's not just milder fatigue.

Maybe comes across as a bit of an insult to people in those professions? "Uncritical" is a tough word to be labeled as.

 

Maybe needs to be a bit fleshed out but this is definitely important. For decades we have had people confidently asserting that X, whatever they wanted to call it but we know they meant something like social contagion of hysteria or whatever, would vanish within a few years, a fad people held on to escape the misery of being too mediocre to live a normal life. This never happened. Prevalence has held rather unsteady, with ups and downs likely explained by the whims of infectious spread and other possible causes (such as possibly some toxic substances), but overall at a similar rate of roughly 1% of the population. Now with LC it has exploded.

For about 2 decades the psychobehavioral treatment approach has dominated with what is claimed to be an effective treatment modality. An effective treatment would obviously reduce prevalence, it can't not. Same as the introduction of antibiotics has reduced the prevalence of untreatable bacterial infections leading to sepsis and death. Same as the introduction of the polio vaccine has effectively reduced the illness to almost zero.

It should always follow that effective treatment should reduce prevalence of an illness, especially from claims that it's fully curative. Which is what is claimed, despite pathetic attempts at wavering between versions, which is itself damning IMO. It's variably claimed that it fully treats the illness, and that it "can be of help to some". This only follows because the current paradigm is based on a psychological model. The treatment approach has been tried. Deniers love to point out how scientific research has not yielded results, but it's stuck at a research phase. Meanwhile the rehabilitation model has not just been tried, it's been completely dominant for over 2 decades. They tried. They failed. This should be the end of it, but intransigence and lack of accountability allows this completely ineffective pseudoscience to remain dominant.

Not sure how best to put it. This has two parts: 1) no evidence shows any efficacy and 2) overall prevalence has actually only gone up, as a result of a virus now known to cause this kind of illness, and in fact shows precisely zero difference between countries that mass-deployed this rehabilitation paradigms, and countries/health care systems that didn't bother doing a single thing.

But it's a tough argument to make since no one has any good data. On purpose, because of the psychobehavioral paradigm advising against it. LC prevalence is not going down substantially with time, and it's clear that rehabilitation makes zero difference, but again no one has any good data yet.

Still it has been asserted confidently that this concept should have disappeared decades ago, markedly at the time when the rehabilitation model became widespread. It has been claimed on a regular basis for the last century at least, and this continues with LC. Perhaps the main point here is just how inept those predictions and assertions have been, how misplaced confidence on ideologically-inspired medical models, which have zero connection to reality, continues to remain the biggest obstacle.

 

Totally happy for them to be insulted. Well earned.

 

I love it, I'll be quoting this all over the shop

 

I think doctors will recognise an element of truth in the sitting up claim, even if it is not universal. It is not purely a matter of milder fatigue. People with terminal metabolic collapse from heart, respiratory or liver failure often prefer to sit up in a chair up until the point where they simply cannot support their own weight. People with fatigue with rheumatoid often like to recline on a sofa for a period during the day but not lie flat.

 

Actually I reckon I can be just as insulting but not as abrasive by removing 'uncritical'.

 

Thanks very much for this useful paper.

I understand correctly, Dr. Souhami’s asked about the justification for differentiating ME/CFS from idiopathic fatigue or other unexplained symptoms. Here are my thoughts.

Since very few physicians diagnose ME and other case definition have fatigue as a hallmark or required symptom, I think it is fair to say that ME/CFS patients suffer from fatigue. Most probably do in the usual sense as well, it would be weird if they don’t. Most people with chronic medical conditions have fatigue high up their list of bothersome symptoms. Fatigue is ubiquitous and as specific as saying that you have symptoms or complaints. It’s also a common term in everyday life where it often doesn’t refer to a medical situation. People say they are fatigued if they don’t really want to do something (lack of mental motivation), like going to an art exhibition of a friend. Fatigue can also feel pleasant, for example, after working a full day in the garden and then settling down in a comfortable chair for dinner. Most often fatigue simply means being sleepy and time for bed. So, I think this already clarifies why a term like ‘chronic fatigue syndrome’ is not very helpful and why patients with a life-long disabling illness do not want to be grouped in a much larger category of people who complain of ‘fatigue’.

I believe the chronicity (ME/CFS is often lifelong) and severity (it often makes work and social life impossible) are a first good reason to differentiate it from the unexplained fatigue complaints that people visit a physician for. Some of these fatigue complaints may be relatively benign (bothersome rather than life-changing), short-lived or related to temporary overwork or stress in people’s lives even when this is not immediately obvious. Some of the idiopathic fatigue or unexplained symptoms may become explicable a couple of months later because patients had another condition such as sleep apnea or side-effects from taking the pill. ME/CFS is not chronic and severe fatigue either. Most patients describe feeling extremely sick rather than tired, even if both may fall under the umbrella term ‘fatigue’.

The second argument is that there are specific symptoms that are frequently cluster in ME/CFS such as orthostatic intolerance, and sensitivity to light and noise. Regarding post-exertional malaise, perhaps your text could focus a bit more on the response to exercise. When I read accounts of patients with MS, depression or other illnesses, they often said it was quite difficult to start (before) or do exercises (during), but that they receive a ‘boost’ from it (afterwards). For ME/CFS patients it almost seems like the other way around: they can often overexert themselves temporarily but afterwards they become more ill and receive quite the opposite of a boost. This seems clinically relevant because graded exercise is one of the most popular treatments for unexplained symptoms such as fatigue. Although there is no clear evidence on this yet, I suspect ME/CFS patients respond to such exercise regimes differently than patients with idiopathic fatigue or MUS.

As a third argument I would argue that ME/CFS prevalence is increased after several types of infections (most notably EBV) so that we know a valuable etiological clue. I think your text is useful in differentiating more benign or shorter post viral symptoms from ME/CFS. But isn’t there also an argument to be made that a syndrome such as ME/CFS is necessary for adequately studying the long-term effects of infections and why some patients don’t recover? I think the recent Long Covid research suggests that a wide and inclusive net doesn’t give us interpretable results. A large part of CFS and ME diagnostic criteria were based on long-term post-infectious symptoms such as chronic EBV.

 

I don't see it this way. I suspect fibromyalgia is much older than the central sensitisation theory and that many FM researchers do not subscribe to this theory even it is the most popular one. There's also a 'central sensitivity syndrome' diagnosis that is much broader than FM. I think that is the theory-driven concept and that FM is more complex than that and more similar to ME/CFS, open to multiple explanations and theories.

 

The point is, does an entire population of people that just graduated with a degree in psychology or physiotherapy, and have not even done anything yet, deserve to be insulted, and made to feel their choice in career has left them as not capable of critical thought? - a choice that is now basically a part of their identity.

I think removing "uncritical" from the sentence helps a lot. But maybe instead of describing it as "who we don't want", describe the quality of the clinicians we do want, which might also get the point across more clearly. Something like "I might even suggest that we need people who are likely to have been trained in disciplines where acknowledgement of the limits of theory-based practice is the norm [and then give examples]."

 

"we need people who have not been trained in disciplines where uncritical acceptance of theory-based practice is the norm"

Is the problem that they're being trained to uncritically accept theory-based practice, as such, or is it that they're being trained by people who believe the practice isn't just theory-based but verified in clinical experience?

 

Actually the history is a bit wonky and I remember it quite well. The term was originally used ny Hench and Yunus around 1975-80 as an alternative for 'fibrositis' which was thought to be a specific local problem that produced tender nodules. By 1990 everyone was agreed that there was no reliable evidence for any nodules and the term suddenly came to mean widespread pain without any physical signs to explain it. Central sensitisation was already a popular theory at that time. We had a junior colleague who did a doctorate on it around 1990 and fibromyalgia became all the rage with some colleagues. Others like me could not see why there was any need for a term other than widespread pain without signs. The patients who got given the diagnosis seemed likely to have pain for all sorts of reasons and were often middle aged women who were thought suitable for telling that their problems were 'biopsychosocial' but probably simply had worn joints or joints hurting with the structural changes around the menopause which are very real.

My listening to people with ME/CFS leads me to think that there is a specific problem worth giving a category. I have never been convinced of that for fibromyalgia.

My experience within rheumatology, which is the specialty that sees fibromyalgia, is that almost everyone thinks of it as a biopsychosocial problem, whatever they might say to patients.

 

They may not deserve to be insulted for the sake of it but if the question is whether it is fair to speak openly about the lack of critical thought in these disciplines I think it is. They have a responsibility to patients to know why they are doing what they do. They have no right to make use of ungrounded treatments. If they do not realise that much of what they do is groundless then it is about time they did.

Brian Hughes is a psychologist and he is very happy to point out the problems with lack of grounding.

Physios and psychologists are not left as incapable of critical thought. They can think critically whenever they like. That may be hard work if there want to carry on in their profession. One of the professionals on the NICE committee was purportedly put under huge pressure by colleagues for being involved in a denial of treatment validity. But if we don't point the problem out then people will continue to be conned.

I actually think we are now a point where it needs to said loud and clear that physiotherapists and psychologists are not wanted on specialist ME/CFS teams. And that is sadly because the majority of them will not bring critical thinking to the job and they may do untold harm. Even Simon Wessely said to me in an email that he was worried the PACE trial would mean that all sorts of incompetent psychologists would be recruited to treat patients without knowing what they were doing.

 

For physios, talking in the round as I was, it is very definitely the physios who invent the unfounded treatments. In the 1970s we just sent patients off to the physios to wave whatever magic wands they fancied. For GET it may have involved psychiatrists and rehab physicians but I suspect it dates back to the post-war days of SunRay rehab centres which were run by physios with 'Physical Medicine' doctors in the background who were mostly third rate physicians who couldn't get a job in a more lucrative specialty. I think the deconditioning cycle aspect of the BPS basis for GET was probably simply more of the same. A way of getting slacker demobbed soldiers to do some exercise and get back to work.

CBT for ME/CFS presumably dates back to the Chalder and Wessely paper which looks to have been written by Chalder as she was presumably the one doing the CBT. It is remarkable how detailed it is since they had no data on whether any of it worked. But I presume that Chalder just lifted the idea from local psychotherapists. Psychologists, psychotherapists, doctors in psychological medicine and psychiatrists, not to mention liaison psychiatrists all seem to overlap but the lack of critical thinking seems to be pervasive in the psychodynamic field.

Either way, any health care professional delivering a treatment ought to make sure they have satisfied themselves that it is well grounded.

I single out physios and psychologists because in my experience the situation for OTs, nurses and doctors is significantly different. Their jobs are seen in terms of doing whatever there is good reason to do and not treating simply for the sake of filling an assignment slot. Physios and psychologists have traditionally been expected to treat if asked to. I agree that that is as much a problem with those asking for treatment but in practical terms I am not sure that is relevant to the context. We would be better off without physios and psychologists being substantive members of a team as far as I can see and their lack of being prepared to say they have nothing to offer is the crunch.

 

It is both but I don't want to get too complicated.

 

@Jonathan Edwards - Is there a particular reason you mention Robert Souhami in the opening to the article? I'm not your target audience but I've never heard of him and wonder whether he's a bit of a stumbling block to other readers at the beginning.