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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Review: Unity of opposites? CFS and the challenge of divergent perspectives in guideline development

Discussion in 'Latest ME/CFS Research' started by Firestormm, Nov 18, 2012.

  1. biophile

    biophile Places I'd rather be.

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    Indeed. GET is "safe" when patients do not increase overall activity levels. GET studies have not demonstrated otherwise, despite presumptions of such made in the underlying rationale of therapy.
  2. Enid

    Enid Senior Member

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    My comments still stand I'm afraid Firestormm @ 19. Just had enough of hearing about "CFS" with it's ghastly history and misrepresentation here in the UK. To suggest the consultancy of SW here (though given up ME) is hardly giving up.

    I entirely agree with gracenote's posting @ 10 of Margaret Williams' comments.

    Peter has posted on another thread HERE
  3. biophile

    biophile Places I'd rather be.

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    That is because there were no failings! </sarcasm> ;-)

    It is worse than that. The response rate of SMC should be subtracted from the response rate of adjunctive therapy. This makes the response rate of CBT and GET about 11-16% for >=2/33 points in self-reported fatigue and >=8/100 points in self-reported physical function. The "30-40%" sounds like the "normal range" (28-30% for CBT/GET but which was not necessarily an improvement because it overlapped with trial entry criteria) and the clinical global impression (41% reported a "positive change" for either CBT or GET, but for SMC it was still 25%, so a net of 16%).

    PACE was a best case scenario and still underperformed expectations even if we assume that the modest changes in questionnaire-taking behaviour are accurate. Kindlon's harms paper shows that adverse effects are commonly reported in real world applications of CBT/GET. Even if these were eliminated by better monitoring (ironically by not pushing patients beyond their limits), Wessely was involved in a CBT study which suggests to me that there is an efficacy-effectiveness gap; CBT outside the confines of a RCT was substantially less effective.

    http://simonwessely.com/Downloads/Publications/CFS/183.pdf

    I wonder how they are going to explain away that particular failure!
    Bob and Firestormm like this.
  4. user9876

    user9876 Senior Member

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    Yes good point, the PACE trial did not demonstrate that patients were complient to their GET protocols and it is unclear how much if any their activity increased. The results of the final 6 minuite walking test suggests that activity increases were miminal.
  5. Merry

    Merry Senior Member

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    Interesting. Thanks, Firestorm, for posting extensive excerpts. Get some rest.

    Simon Wessely feels threatened even by a Scottish Public Health Network report (one unduly influenced by pesky patient activists).
  6. In Vitro Infidelium

    In Vitro Infidelium Guest

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    This kind of unsubstantiated (and unsubstantianable) personalisation (a resort to ad hominem fallacy) only detracts from the very real (and substantianable) criticisms of the research that most readers here would consider has driven medical assessment of M.E/CFS in the wrong direction. It is entirely reasonable that Wessely (a clinician and academic who now holds a key professional position - Dean of Psychiatry at a world centre of Psychiatric teaching) would be a co-author of a document that is critical of the Scottish document. The two documents have to stand or fall on their own - irrespective of who wrote them, nullius in verba applies equally but so also does the fallaciousness of ad hominem argumentum.

    IVI
    Holmsey likes this.
  7. Merry

    Merry Senior Member

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    IVI, I am not qualified to judge the research in the way that you are. But I can see for myself what kind of person Simon Wessely is and the harm he has done. Your posts that criticize others for the way they choose to participate in activism (such as telling Kati, in the "Simon Wessely Wins Award for 'Standing Up for Science' " thread, not to tweet) are out of line.
    Valentijn likes this.
  8. alex3619

    alex3619 Senior Member

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    Yes, that is a very good point. Safety might be directly linked to non-compliance. Interesting possibility. Bye, Alex
  9. user9876

    user9876 Senior Member

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    I was trying to make a different point in this and my previous post which is it is useful to identify exactly what the PACE trial tells us. Then we can look at what inferences are being separately drawn and the basis for them being made. In their reasoning they seem to be assuming compliance and they are also implying that patients activity increased. However, I don't remember them quoting any evidence on either bit - I've not read the protocol so I'm not sure what they would have recorded.
  10. barbc56

    barbc56 Senior Member

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    I don't think any opinion as long as it's appropriate and within the rules of this forum is "out of line". I don't remember what was said but I think there are a lot of sides to this issue and it's healthy to air these.

    Take care.
    Barb C.:>)
    Holmsey likes this.
  11. Merry

    Merry Senior Member

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    Barb C., please translate "out of line" as "I don't like this behavior." I wasn't suggesting IVI had broken forum rules.
    Valentijn likes this.
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I doubt I have ever written anything on any M.E/CFS forum that tells anyone what they can or can not do. I do often present 'if - then' arguments, because that structure allows clear reasoning and demonstration of the potential effects of differing choices. Advocacy impacts upon us all - if it is carried out badly, the consequences affect future efforts; explaining to someone what the consequences of their actions are, or are likely to be, isn't some interference with a religious freedom, it's a basic democratic process. In the real world such 'explanations are frequent and usually delivered in far more robust terms than the very restrained way I responded on the other thread.

    IVI
    Holmsey likes this.
  13. Firestormm

    Firestormm Guest

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    Came across this earlier. Seems relevant to part of the discussion raised in the Review concerning the Canadian Criteria, but also in relation to more recent criteria also perhaps:

  14. Marco

    Marco Old blackguard

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    Mmm.

    Check for all three. Should we have a straw poll as to how many here count ataxia amongst their symptoms?

    In my case I have periodic ataxia. Should I therefore go back to my GP and remind him of this symptom and demand an alternative diagnosis?
    I'm not aware of any family history of ataxia and it hasn't been a lifelong problem; ergo it is an acquired ataxia :

    http://www.nhs.uk/Conditions/Ataxia/Pages/Causes.aspx

    That's quite a list of possible causes that would need to be excluded (via extensive testing) before arriving at a safe diagnosis and assuming they were excluded, would a diagnosis of idiopathic late onset cerebellar ataxia (ILOA) be any more satisfactory of lead to better treatment?

    Would excluding other possible causes of ataxia, “palpitations with cardiac arrhythmias”, and “loss of thermostatic stability” rather than considering the possibility that they are frequent symptoms of the 'syndrome' not represent
    Have they really thought through the implications of their opposition to the CCC and later criteria?

    PS Apologies for the variable fonts - too much copy and pasting.
  15. Firestormm

    Firestormm Guest

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    Morning Marco,

    I think that the point is Ataxia and other specific conditions cannot be consider part of 'ME'. They are differential diagnoses. At least that's the argument being advanced. 'ME' is 'ME' i.e. a distinct condition all of it's own. The larger argument of course is not addressed in this Review.

    So as I referred to previously, examinations that result in a confirmed diagnosis following e.g. 'fitting' of e.g. 'epilepsy' cannot be considered a symptom of 'ME'.

    I would expect that very few people with 'ME' also have a confirmed diagnosis of e.g. Ataxia. This could be simply because they haven't been appropriately assessed.

    Could be wrong, but I think that's what they are getting at with things like Ataxia.
  16. Marco

    Marco Old blackguard

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    Perhaps not for this thread but to me this is a fundamental problem of 'differential diagnosis'. It assumes that an individual's illness must fall into a little box that is discrete and different from all other little boxes and diagnosis, research and treatment follows in this vein.

    Ataxia and 'fitting' are symptoms that may have many causes. In some cases the cause may be clearly identified, in others a cause may be suspected but not confirmed or the presentation of symptoms may be 'untypical' or indeed all likely causes are excluded and it is designated as idiopathic.

    None of this logically excludes the possibility that these symptoms are part of a distinct ME/CFS syndrome, that ME/CFS and say diabetes (which can cause ataxia) can't occur co-morbidly or that none of these labels are in fact discrete illnesses but individual manifestations of a common underlying pathology.

    I lean to the latter view and 'differential diagnosis' that excludes less common symptoms as likely reflecting missed or misdiagnosis only serves divert attention from what may be important clues to the underlying pathology.

    In my humble opinion.
    Firestormm likes this.
  17. Firestormm

    Firestormm Guest

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    Of course the flip side to the argument of differential diagnoses and/or co-morbidities is this: if you associate everything with the largely untreatable 'ME' then you run the risk of condemning a person to little effective intervention. Whereas if you are examined and assessed as having e.g. Ataxia or epilepsy or even depression - alongside 'ME' - then these might be treatable. Hope that makes some sense :)
  18. Marco

    Marco Old blackguard

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    Makes perfect sense and a fair point although I'm not convinced White and Crawley were as much concerned with missed diagnoses or untreated co-morbidities as they were with the inclusion of ataxia etc in a ME/CFS case description. I don't recall any objections to mood disorders etc being considered part of the ME/CFS syndrome rather than merely treatable co-morbidities.

    Anecdotally I have been diagnosed (in chronological order) with OCD, depression, IBS, fibromyalgia, ME and then CFS. Onset of all was contemporaneous but all were treated by the various 'specialists' as discrete conditions.

    No treatment to date has been in the least effective for any of these 'co-morbidities' and once you strip them out of the symptom constellation you're pretty much left with fatigue that remains unexplained and untreatable.
  19. Holmsey

    Holmsey Senior Member

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    Hi Merry, I don't think IVI has either, but my understanding of the personal attack rule is that you cannot post personal opinion of other users, and that your comment must be pertinent to the thread under discussion. I think suggesting IVI is 'out of line' breaches both, this is unarguably personal, directed and was based on postings in a different thread!

    IVI's post to my mind calmly and rationally outlines the reality within which Simon Wessely operates, within the establishment he is highly qualified, highly respected and seen as an authoritative innovator with respect to our illness. Large parts of that same establishment probably subscribe to the view that Simon Wessely holds of us, that we are irrational, counter productive and bordering on the criminal.

    IVI gets this and I believe was simply pointing out that among the pointless spleen venting and name calling the rational voice of verifiable science is lost.

    I see great advantage in getting that message through to the same establishment that SW has so impressed, I see no advantage in personal attack which only serves to close those same ears while loading the gun of the next tabloid attack on our illness.

    IVI asks you to understand that every posting is an act of advocacy and that all advocacy, good or bad, effects us all equally. Again I feel this is an unarguable standpoint.

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