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

Discussion in 'PsychoSocial ME/CFS News' started by Indigophoton, Apr 18, 2018.

  1. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    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
     
    Last edited: Apr 18, 2018
    Inara, Barry, Luther Blissett and 4 others like this.
  2. chrisb

    chrisb Senior Member (Voting Rights)

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    " Luc Bonneux is an epidemiologist". What a coincidence. So was Simon Wessely. No more need be said.
     
  3. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    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 :thumbup:. 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.
     
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  4. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    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.
     
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  5. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Oi! Nothing wrong with being an epidemiologist.
     
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  6. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    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.
     
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  7. chrisb

    chrisb Senior Member (Voting Rights)

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    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.
     
  8. Lucibee

    Lucibee Senior Member (Voting Rights)

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

    chrisb Senior Member (Voting Rights)

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    I recognise a personal attack when I see one.
     
  10. NelliePledge

    NelliePledge Moderator Staff Member

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    I hate Google translate it mangles things up a lot. However even from a mangled text it is clear the stance is negative towards ME patients. Insulting us by calling US flat earthers is the ultimate irony.
     
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  11. Lucibee

    Lucibee Senior Member (Voting Rights)

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    It wasn't meant as one. Honest. :whistle:
     
  12. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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

    Adrian Administrator Staff Member

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    I would have thought that epidemiology should be really interesting. But maybe I've misunderstood what it is. Now we have large amounts of data and ways to process and learn patterns then looking at disease spread patterns should be a reinvigorated. I think google can predict an outbreak of the flu faster than doctors and apply analytics to that.
     
  14. chrisb

    chrisb Senior Member (Voting Rights)

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    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.
     
  15. TiredSam

    TiredSam Moderator Staff Member

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    They did once, and made the headlines. The next time they got it all wrong. Think I heard a "more or less" podcast about it. The replication crisis strikes again.
     
  16. Adrian

    Adrian Administrator Staff Member

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    I think its more due to their beliefs and failures of logical reasoning in terms of their inference 'don't understand => psychosomatic' . Which is precisely the inference that seems to be the basis of this article. But I don't think they actually provide any argument to backup their claim just some very bad humor that could be equally (or more appropriately) applied to them and their use of 'no known test => psychosomatic' axiom.

    I've never looked at epidemiology as a subject but I'm tempted because I'm interested in malware spread patterns and I'm wondering if they have anything that could be applied there. (Sorry very off topic).
     
  17. TiredSam

    TiredSam Moderator Staff Member

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  18. Trish

    Trish Moderator Staff Member

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    I think epidemiology is a fascinating field of study, and for well defined illnesses can be useful in understanding patterns of spread etc, but, as with every field of science, it's only as good as the people doing it.

    Trying to study epidemiology of ME/CFS from questionnaires that ask about fatigue, among a whole range of other things, as Esther Crawley has done, is bound to produce garbage because she doesn't understand what ME/CFS is.

    That doesn't mean it can't be done well.
     
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  19. Lucibee

    Lucibee Senior Member (Voting Rights)

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    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)
     
  20. chrisb

    chrisb Senior Member (Voting Rights)

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    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?
     
    Last edited: Apr 21, 2018

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