The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Psychiatric Times: Are Some Patients Trying to Medicalize Chronic Fatigue? 6/22/11

Discussion in 'General ME/CFS News' started by justinreilly, Jun 30, 2011.

  1. justinreilly

    justinreilly Senior Member

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    by Prof. Ronald Pies,
    http://www.psychiatrictimes.com/display/article/10168/1886900

    relevant excerpts:
    To view the article you have to sign up (for free). To comment you need to say you are a physician. If you comment, pls also send to his email, below. If you don't want to sign up and want to comment, just send him an email:
    piesr@upstate.edu

    I posted and emailed:
     
  2. Enid

    Enid Senior Member

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    Very interesting - thanks Justin - a little reason at work here at last and ability to be self citical - has to be better.
     
  3. Snow Leopard

    Snow Leopard Hibernating

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    The article looks OK on the surface, but it is the same old retreat to commitment.

    Someone needs to point out that (a) CBT/GET does not result in objective improvements in activity levels as shown in the actometer results of the Wiborg et al. meta review of CBT studies and Belgian audit. (b) while no highly specific biomarkers have been identified, biological abnormalities such as the recent brain imaging study, abnormal acidosis, gene expression, cytokine response and levels of oxidative stress after exercise, when compared to matched sedentary controls.

    http://www.kce.fgov.be/Download.aspx?ID=1222
    http://www.ncbi.nlm.nih.gov/pubmed/20047707
    (see the recent discussions on the other findings for the other links)
     
  4. lucy

    lucy Senior Member

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    We maybe need to look at CBT from another perspective. If you google scholar autoimmune disease and cognitive behaviour therapy, you will see they try it on lupus patients, RA patients etc. And those diseases have markers! Most probably the only situation where they do not try CBT is terminal cancer? As psychology is a very weak science, they are trying their best by randomly taking any disease and trying out what they have.
    This is of course again, a very defensive reply. We do not earn respect this way. Therefore I think the best position in commenting such articles would be to stop being defensive and taking a position:
    "Yes, CBT helps to reduce the severity of some symptoms (as in any disease), but we want that science does not stop here and adequate research is done in this field. It is our right",
    the same for GET:
    "Yes, GET has helped a small percent of the patients in some studies, and as in such a underresearched disease, it is an achievement! Neverthless it is harmfull for some of the patients or it does no effect to the rest. We need something better than GET."
    Strangely enough, they do not try hypnosis everywhere.
    It would be interesting to collaborate with a journalist, whose aim would be to analyse the situation. All the media is either virus-pro or schizophrenia-pro, we do not have an independant analyst (two articles per year would suffice). Is it possible to be independant in ME/CFS? Can't we get Michael Moore to make a movie? Should we write a proposal to him? I think he only takes issues where you have numbers, and you have to be blind not to see the issue, while our situation is unclear, until we get the biomarkers. Maybe he would want to make a movie about how terribly unclear our situation is?
    The bad thing is, text like this comes out somewhere at least twice per month. Study papers come out at most once per month. It is much easier to speculate than to do research.
     
  5. Snow Leopard

    Snow Leopard Hibernating

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    The difference is in the language. In those diseases they claim it is to reduce rates of depression and to increase the ability to cope - this is especially useful in terminal cancer. In CFS they claim it will drastically reduce our symptoms and allow us to soon go back to work. If they were to treat CFS patients in a similar manner to those with Lupus, RA, MS etc, patients would be a lot happier.
     
  6. Esther12

    Esther12

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    @ Lucy: CBT can 'help' with everything, so long as the improvement is measured according to questionnaires.

    There are things that I like about CBT as a technique, but I think that it's usefulness can be massively exaggerated for a whole load of illnesses, and it also seems to have more potential for abuse than a lot of other psychological approaches.
     
  7. jace

    jace Off the fence

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    Esther, as I said in my recent rapid response published in the BMJ (please excuse the blowing of my own trumpet tara taa)

    Perhaps people do not understand the difference between the form of CBT offered to other illness groups and that offered to ME/CFS patients, which is advocated as effective by the PACE trial paper and CFS/ME clinics. I copy below an excerpt from the PACE results, describing the form of CBT used.

    "Cognitive behaviour therapy (CBT) CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic fatigue syndrome as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue. The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant's symptoms and disability" (1, page 3).

    The irony is that the real life experience of people with the neurological disease myalgic encephalomyelitis shows that ignoring their symptoms and engaging in activity beyond their very limited capabilities is the way to aggravate the disease. Many severe, bed-bound patients date their decline into full-care status to taking part in Graded Exercise and this form of CBT which challenges their "false illness beliefs".

    1) White, PD; Goldsmith, KA; Johnson, AL et al Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial; The Lancet, Early Online Publication, 18 February 2011doi:10.1016/S0140-6736(11)60096-2
     
  8. Esther12

    Esther12

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    Hi Jace - I agree. One of the reasons that CBT can be more prone to abuse is that is places such emphasis upon the practitioner's ability to distinguish between distorted and rational beliefs. In the case of CFS, where there's little good evidence, and a lot of prejudices, this is unlikely to go well. Also - it seems somewhat uncertain as the the extent that the underlying basis for the CBT carried out under Pace affected the way in which patients were treated. Given the low rates of improvement found for CBT, I would have thought that it would have been difficult to go on telling a patient their disability is solely perpetuated by unreasonable fears for 18 months.
     
  9. Wayne

    Wayne Senior Member

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    I found this article a bit frustrating to read. His words seemed a bit "flowery" to me, which made it difficult to understand what exactly his points were. The underlying feeling as I read however, was that he was trying show how objective his was, but still had his own personal bias. So I was not surprised to see his following quote toward the end:

    Why not genuine disease, such as cancer or multiple sclerosis, etc.? Why pick two "psychiatric" diseases, which would seem to infer that CFS is also psychiatric? I was appreciative however of his cordial reply to comments following the article.

    Wayne
     
  10. justinreilly

    justinreilly Senior Member

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    This is exactly it, Jace!

    Lucy, the form of CBT studied on ME patients and recommended for us by these all these Wessely School charlatans is to correct our supposed abnormal belief that we have an actual physical disease and our supposed 'phobia' of movement! And to teach us that GET has been proven not to harm us and is the only 'treatment' proven to help us! And then the Graded part of GET is continuous racheting up of exercise which is guaranteed to make us sicker. These are all lies which cause our disease to get worse. That is why they are totally unacceptable. They are doing their best... their best to keep us sick and save insurers money by not treating us.
     

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