Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Fear-of-Exercise hypothesis

Discussion in 'General ME/CFS Discussion' started by Asa, Jul 10, 2015.

  1. Asa

    Asa Senior Member

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    Does anyone happen to know, please, when the fear-of-exercise hypothesis / exercise phobia (for ME/CFS) first came into being?

    I'm looking, please, for sources--articles or studies. I'd like to know how far back this hypothesis can be traced.

    Thank you!


    [Edit: There is this...
    http://forums.phoenixrising.me/inde...-trial-data-analysis.34982/page-6#post-547712]
     
    Last edited: Jul 10, 2015
  2. Effi

    Effi Senior Member

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  3. Asa

    Asa Senior Member

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    Effi likes this.
  4. Valentijn

    Valentijn Senior Member

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    Wessely & Co were stating that exercise avoidance was part of the disease going back to at least 1989:
    In 1991 they explained that GET didn't work due to increase in conditioning, but rather by supposedly overcoming avoidant behavior:
    They also talk about ME/CFS in a fear/phobia context in the 1989 paper, and the "fear-avoidance model". It's the earliest paper I know of, and they're only citing to chronic pain studies as the basis for that theory, so there might not have been any ME/CFS studies published yet with that suggestion.

    Edit: That paper cites to Letham, mentioned above as proposing the theory in 1983. But Letham published in regards to pain, not ME/CFS.
     
  5. A.B.

    A.B. Senior Member

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    The therapy to treat presumed fear avoidance is called graded exposure therapy, or "GET".

    The idea is that the fear is irrational, and that patients will learn to recognize that there is nothing to be afraid of if they're gradually exposed more to the thing they're afraid of.

    This doesn't make any whatsoever as ME/CFS patients learn to reduce activity by exposing themselves to it.
     
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  6. Effi

    Effi Senior Member

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    slightly off topic, but I read a bit further into the wikipedia page and found this (my bolding):
    Does anyone know how to change this wrong info in Wikipedia? (Or is Wikipedia full of this kind of nonsense?)
     
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  7. Asa

    Asa Senior Member

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    Okay - so (it seems that) the Wesselians grafted Letham's pain-avoidance theory onto ME/CFS. Just trying to understand the evolution over particular years. Thank you!


    I thought there was a thread at one time discussing editing wars on Wikipedia. Maybe it could be asked in a separate thread (so more people might see it): Who, if anyone on PR is watching Wikipedia? If Wikipedia is already someone's "baby", perhaps they might be willing to make the appropriate changes and monitor (babysit) them to ensure that they aren't later memory-holed. Sorry I'm not able to look into this more - help answer this - at this time.

    Effi, if you happen to find who the Wiki contact is though, would you please let me know? I have some other Wiki-related info that I'd like to pass on to someone in the know. Thank you!
     
    Last edited: Jul 10, 2015
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  8. Effi

    Effi Senior Member

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    I tried to find some earlier works, but delving into the seventies online is a bit tricky ;) Lethem must've built his idea on something earlier I'd expect... In the end these bogus theories are probably all based on Freud's crazy figments of imagination, cause before him nobody believed in this stuff.

    I'm really sorry, I'm not able to go into this more right now, although it would be interesting...
     
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  9. jimells

    jimells Senior Member

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    In theory anybody can edit Wikipedia - and anybody can immediately reverse the edit. And yes, it is full of nonsense. Just like any source of information, one must carefully sift out the chaff to find the wheat. When I was farming, I used a combine and a seed cleaner to do this kind of grunt work. So far, no such machines are made for the Internet.
     
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  10. Effi

    Effi Senior Member

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    That's what I was fearing, that the moment we'd change it, some random troll would just change it back again. Thanks for the info @jimells !
     
  11. alex3619

    alex3619 Senior Member

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    The battle to get good info into Wikipedia has been waged for many years. Stuff is very hard to change, as soon as you do you get locked out. They cite "authorities". Wikipedia appears to be authority driven, not fact or science driven. I sent out a global alert to advocates on this many years ago.
     
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  12. Effi

    Effi Senior Member

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    that just says it all... thanks @alex3619 !
     
  13. redaxe

    redaxe Senior Member

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    Lets not forget that even before he came out with that CBT/GET approach psychology and psychiatry had been pushing those approaches on people with various health problems for a long time. Not just CFS/ME but a whole lot of conditions like depression, schizophrenia etc were treated with a array of degrading treatments that are illegal today.
    When you get a lot of powerful psychologists like Freud who popularize textbook psychology which moves from the textbook to the patient ward and the establishment of academia that specify in this pseudoscience you can quickly develop a very narrow minded field where group-think prevails and protecting the orthodoxy of psychiatry prevails. .
    It is out of that culture that you get people like Wessely - as others here have said if it wasn't him someone else would probably be doing the same thing.
     
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  14. sarah darwins

    sarah darwins I told you I was ill

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    6 months into my attempt at self-education about the science of me/cfs and alex3619’s signature line —“ …. I can't believe its not science!” — just sums up my impressions more and more.

    I wouldn’t have got away with this kind of stuff in school science classes, aged 13 or 14.

    I realise conjecture has a place in science — in the formulation of hypotheses and in deciding where to go next after unsatisfactory or puzzling results — but it was drummed into me as a child that you had to show awareness that it was conjecture and take pains to make sure that no one could construe it as fact.

    It seems that academics in the psych disciplines are happy to build vast cathedrals of conjecture which look so impressive that everyone just assumes they must be built on solid foundations.

    I see they’re at it again today, “linking” smoking to schizophrenia and psychosis. It’s another of their beloved Systematic Review and Meta-Analysis jobs. I can’t see that they’ve come within a thousand miles of establishing causation, but if you look at the headlines in today’s papers you see a perfect example of where this stuff leads. Here is the evolution of a myth in action:

    Smoking 'may play schizophrenia role' (BBC News)
    Smoking may trigger mental illness: study (The Australian)
    Smoking tobacco might increase risk of schizophrenia, say researchers (Guardian)
    Smoking may trigger schizophrenia, scientists warn (The Telegraph)
    Smoking Linked to Schizophrenia (WedMD)
     
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  15. A.B.

    A.B. Senior Member

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    In the psych world, correlation equals causation without further question whenever it is convenient.
     
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  16. worldbackwards

    worldbackwards Senior Member

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    I remember that a hypothesis about fear avoidance was presented as fact in the original NICE guidelines, which was pointed out and referenced by the MEA at the time.

    If I can find their response, I might be able to shed some light on this, because I think it was pre-1989. But then again, it's a long time since I looked.

    Edit - It was ME Action UK - and it was later than '89. Ho-hum.

    The history of 'fear-avoidance', and ME in general, is a lot of half-arsed theories repeated often enough by powerful people until they became indistinguishable from reality. It's a lesson in how "reality" is created in the modern world - truth itself is rarely relevant when no-one's really watching very closely.
     
    Last edited: Jul 10, 2015
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  17. halcyon

    halcyon Senior Member

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    The difficult part about Wikipedia is that the medical articles have stringent requirements. Information in medical articles has to come from high impact secondary sources, which are usually review articles from well known medical journals. Unfortunately there are more of these secondary sources extolling the benefit of CBT/GET than there are sources showing that they don't actually work, so this is the information that ends up in Wikipedia by design. In a perfect world this wouldn't be a problem, because in a perfect world the PACE trial would have never passed peer review. This is one major weakness of Wikipedia, it can only ever be as good as the medical research is, and as we all know it's decades behind in this disease.

    Anyone is free to edit Wikipedia articles, but I can guarantee that if you tried to change that section it would be immediately reverted by other authors.
     
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  18. alex3619

    alex3619 Senior Member

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    As we know if you assemble enough different variables, with limited data sets, you will find correlations. It can be random chance association, or linked to factors not measured, or indeed, sometimes, causation. Good research methodology acknowledges this. Bad research methodology involves things like pretending to acknowledge this and acting as though the association is definitely causative. I forget, I will have to look it up, that might be one of the markers of pseudoscience.
     
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  19. halcyon

    halcyon Senior Member

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    The CFS article seems to have a long and storied past. I've been watching the activity on the main article for about a month. Presently the most active authors appear to be a Canadian doctor, a British doctor, a handful of patients, and someone who is neither a patient nor a doctor but seems to be very hostile towards patients. The page is watched very closely because it's controversial and so far most edits I've seen have been quickly reverted.

    The main problem is that we lack a lot of balanced secondary research sources from which to draw on to improve the article. As far as I can tell the IOM report should count as an excellent secondary source and I believe it should be used to update many parts of the article. Any changes made have to be defendable with quality research sources. If anyone here is aware of quality secondary sources (preferably multiple sources) that refute the CBT/GET claims then I'd be happy to make some edits based on them and try to defend it. I'm just not aware of any good research to back this up. Until CBT/GET is fully refuted, we'll not be able to pull out references to it in Wikipedia. However, we can downplay the supposed benefits using the right sources. I believe the IOM report may have some ammunition to do just that, but I haven't had time to review it closely.
     
  20. biophile

    biophile Places I'd rather be.

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    https://en.wikipedia.org/wiki/Fear-avoidance_model

    A quick look at the reference for that paragraph reveals that it does not mention fatigue nor CFS at all:

    "Avoidance of Anxiety as Self-Sabotage: How Running Away Can Bite You in the Behind"

    https://www.psychologytoday.com/blo...y-self-sabotage-how-running-away-can-bite-you

    Therefore, AFAIK, you are entitled to remove that text from Wikipedia for being unsupported.

    Based on the evidence that I am aware of, the paragraph itself would be deceptive even if it had a relevant reference. Trials of CBT/GET for CFS show that compared to the control group, a minority of patients are self-reporting modest improvements in fatigue and disability, but the other objective measures of function generally show no such improvements. So all the talk about tackling the fear of activity in order to resume normal daily activities is deceptive.
     
    Last edited: Jul 10, 2015

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