(Not a recommendation) CFS or where is my stocking?

This is an opinion piece opposed to the recent Dutch Health Council changes. Apparently the physiology of ME/CFS has a lot in common with leprechauns.

Google translated article here, original (in Dutch), https://www.medischcontact.nl/opinie/blogs-columns/column/cvs-of-waar-is-mijn-kous.htm

 

" Luc Bonneux is an epidemiologist". What a coincidence. So was Simon Wessely. No more need be said.

 

I never know what to call the condition when talking to people or even just when thinking about it. 'Myalgic Encephalomyelitis' seems factually inaccurate in most (the vast majority of?) cases. But 'CFS' is much more gravely misleading. So the gripe about the name is partially valid, but the analogies are false. The value of Pi is geometrically self-evident. The roundness of the earth is directly observable and the result of gravitation. CFS?

The author offers a speculative, unsubstantiated hypothesis as to the cause of the condition. Not exactly Pi.

Maybe some clarity is lost in translation here but the more I read this the less it makes sense. The sort of pathological neurological feedback loop described here sounds decidedly unlike a cognitive process, so the bold statement seems directly contradictory. I'm particularly puzzled at the word 'psychosis'.

Again I could be misreading due to sketchy translation but this sounds foolish. As far as I can tell people with the condition overwhelmingly 'ignore' the 'alarms' for as long as possible - trying to work, raise their children, exercise, etc. - until they just can't anymore. Nobody doesn't try.

This goes back to the analogies discussed above. As stated, they don't make sense. There is currently no satisfactory understanding of the condition in contrast to our understanding of Earth's shape. Thoughtful patients, advocates, and scientists are not claiming to know exactly what is going on; they just want to know what is going on and have eliminated mental causes through consideration of several lines of evidence. Certainly sufferers' individual reflection regarding their experience of the condition plays a part in their convictions (how could it not); but biochemical findings, the sometimes extreme reduction in functioning following a typical pattern (post-infection or other major stress), and apparent lack of depression, psychosis, or explanatory emotional trauma all point away from a disease caused by misguided thinking and toward the need for more biochemical research. Thoughtful patients, advocates, and scientists really just want more, better science and, in the meantime, support for those who are really suffering and need help. I don't think these are bad things.

Meanwhile proponents of the 'unhelpful cognitions' story continue to put forth unsubstantiated and perhaps unsubstantiable hypotheses as if they are self-evident truth. Oops, it's just their self-evident truth, grounded in psychoanalysis, the ultimate postmodern poseur 'science'. It appears to me that the author, as a proponent (although I can't quite tell because the translation and perhaps the original writing is garbled) of such truths is guilty of his own most damning accusation.

But here's the point for people here to consider: isn't using the name Myalgic Encephalomyelitis a point of weakness for the patients, advocates, and scientists who are trying to make the better scientific argument? Detractors can always rightly point out that it's not technically correct and use that as a place to latch on. My brainstorm is to call the disease ME, but so that it doesn't stand for anything, like the SAT, or Harry S Truman . There's probably not a great solution so long as the condition isn't better understood. Maybe it's not a big deal.

+10 points for gnomes.

 

On the name thing: it's not an argument in good faith, so it's not worth engaging in. Malaria literally means 'bad air', but we don't spend hours debating its validity or the intentions/honesty of malaria patients. People just call it malaria. We have to ask why people care so much about the name of our illness over the many other inaccurately named illnesses--and the only logical explanation is that there's a battle of ideologies going on.

Myalgic is correct in 80% of cases. Encephalomyelitis is incorrect in the way most neurologists mean it. In the loosest interpretation of the word, it's not totally incorrect, since there is evidence of low-grade neuroinflammation ('encephalo' = 'brain' + 'itis' = 'inflammation'). But encephalomyelitis typically refers to the kind of damage done to the brain and spine in illnesses like ADEM and so on, where there are obvious and deleterious lesions as a major part of the pathology.

The ME Association quite rightly pointed out that you could just change the 'E' to 'encephalopathy' to make it more accurate, and then sticklers don't have to worry about inaccuracies. But the detractors won't be happy with that name either. So again we have to ask why.

The point is that these people don't want us to use ME at all--because it suggests a physical pathology. They'd much rather use the demeaning 'chronic fatigue syndrome' because they only want to study long-term, unexplained fatigue and they don't want to entertain any other ideas. Chronic fatigue syndrome is also closer to 'fatigue syndrome' (F48.0 - neurasthenia), which means they get to enact their mischief. They can claim to talk about chronic 'fatigue syndrome' rather than 'chronic fatigue syndrome, AKA ME' when it suits them (as they have done), and quietly co-opt the treatment of hundreds of thousands of patients.

 

Oi! Nothing wrong with being an epidemiologist.

 

This is seriously the 4th blog in that medical magazine with this kind of horrible uninformed talk about me/cfs.

In my opinion, it shows that the effect of the advice of the health council is bigger than I thought. Why would all these doctors (who have nothing to do with me/cfs in their practice) suddenly write about it?

I think these articles have an upside. A lot of doctors would read this kind of articles and not agree with the horrible tone of it and the stigmatizing of patients. Hopefully they start looking for more information and read the blogs of Jim Faas, who writes in the same magazine with very informed and nuanced blogs. I think in this case, maybe the old "negative attention is also attention" might be true.

 

Sorry. I am sure there are good epidemiologists, but where is the humour in that! There seem to be some, however, who think they can study the general and draw conclusions about the particular.

 

Doing it the other way round on insufficient data can be just as bad.

 

I recognise a personal attack when I see one.

 

It wasn't meant as one. Honest.

 

I'm not so sure. Maybe we could study the distributions of good and bad ones?

 

It should. But it is arguable that we are in the position we are because a group for reasons best known to themselves, decided to study the epidemiology of chronic fatigue, conflate it with neurasthenia, and reject any input from people who knew what they were talking about.

 

It is. But SW is not an epidemiologist. He just did an MSc in it once.

I've written a textbook on epidemiology! (well, sort of)

 

That's a fascinating insight. Does this mean that the paper by SW in, I think, 1994 was in effect a student work written for an MSc
.? It puts a completely different complexion on matters.

I was first drawn to the question of the quality of some of the papers in this oeuvre with the 1989 paper by Wessely, David,Butler and Chalder when it was suggested somewhere that Chalder obtained her MSc in 1990.

As a matter of interest is it known who SWs supervisor was?