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NYT: Letter to Editor Follow-up to the Rehmeyer/Tuller PACE Article

Discussion in 'General ME/CFS News' started by Gemini, Mar 27, 2017.

  1. Gemini

    Gemini Senior Member

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    New York Times: Two Letters to the Editor appeared in the March 27, 2017 print edition commenting on the March 19 Rehmeyer/Tuller PACE article. Below is Fred Friedberg's:


    To the Editor:


    In “Wrong on Chronic Fatigue” (Sunday Review, March 19), Julie Rehmeyer and David Tuller rightly point out the overreach of claims that behavioral treatments of the illness lead to recovery.

    Although such treatments are commonly used to improve quality of life in chronic medical illness, they are rarely controversial because full restoration of health is not claimed or expected. Recovery claims are problematic because they strongly suggest that the talk therapy treatments used are curative.

    In the case of chronic fatigue syndrome, this implies that the illness is a matter of distorted perception and not reality. It is then only a small step to conclude that the search for medical intervention is unnecessary or even a waste of time.

    Unfortunately, such views are widely shared among treating physicians. Thus, we have a million ill and debilitated patients who are medically underserved. This can be addressed with informed provider education linked to the emerging body of scientific research that shows promise to better understand the illness and to develop truly effective treatments.

    FRED FRIEDBERG
    STONY BROOK, N.Y.

    The writer is president of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and the founder and editor of Fatigue: Biomedicine, Health and Behavior.
     
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  2. duncan

    duncan Senior Member

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    Number of times he uses the word "illness": four.

    Number of times he uses the word "disease": zero.
     
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  3. Nielk

    Nielk

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    Number of times he mentions GET - 0
     
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  4. alex3619

    alex3619 Senior Member

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    His area is psychotherapy so I am not surprised he does not cover graded exercise. However it would have been nice to have seen one sentence devoted to it at least. My caveat is that we do not know if the letter is posted in full, or edited by staff at the NYT.

    I am very anti-psychobabble, but I cannot make overly negative claims about CBT as applied to illness management by providing patients with a tool to guide thinking. Its not particularly harmful in this specific context, which is its usual application in disease, and if a patient finds it useful I would not want to convince them otherwise.

    The specific use of CBT he is arguing about is a big part of what is wrong with PACE. CBT as a strategy to modify illness causality beliefs is ill-thought out, unproven, and dangerous for several reasons, not least because it appears to give sanction to the idea of exercise in ME.
     
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  5. duncan

    duncan Senior Member

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    My impression is he seemed quite careful in his word choice.

    CBT relative to ME/CFS needs to be placed in historical - as well as current - context. We know that; I would think so should he. But he doesn't even volunteer much in that regard - only that maybe there was some hyperbole("overreach"), and potentially some unwarranted inferences (although he is a bit vague here).

    Personally, I would hope for a more overt, unequivocal and comprehensive reproach from an advocacy.
     
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  6. Gemini

    Gemini Senior Member

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    Second letter:

    To the Editor:

    The PACE trial referred to in the essay might be wrong in emphasizing increased exercise for patients with chronic fatigue syndrome. But at least the researchers acknowledge that the illness exists.

    From the time we wrote “Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness” (1992) to the present, people with chronic fatigue syndrome have been too often met by their doctors and family members with skepticism and even judgment that they are malingerers or depressed souls seeking attention.

    Since their symptoms cannot be seen and are difficult to measure, a treatment plan is often not even considered. People with chronic fatigue waste a lot of their precious energy “proving” their illness.

    The beginning of recovery has to start with a mutually trusting relationship between patient and doctor. Genuine attention and respectful listening by the physician to identify the patient’s symptoms and concerns is the sine qua non of any effective treatment.

    PAUL J. DONOGHUE
    MARY E. SIEGEL, STAMFORD, CONN.
     
  7. Murph

    Murph :)

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    That's what we call the soft bigotry of low expectations. If we're delighted a doctor even thinks the disease is real, we're going to be showering praise on a lot of people not achieving much at all. Donoghue and Siegel might aim a little higher...
     
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  8. Webdog

    Webdog Senior Member

  9. Snow Leopard

    Snow Leopard Hibernating

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    So in 25 years all we've accomplished, is well, oh it's real, but we still haven't bothered to develop any efficacious treatments? FFS.
     
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  10. Sean

    Sean Senior Member

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    chronic fatigue ≠ chronic fatigue syndrome

    Even Wikipedia manage to get the basic distinction correct.
     

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