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BMJ b/s painting PWME as threatening psych patients

Discussion in 'General ME/CFS News' started by Tammie, Jun 23, 2011.

  1. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Reticence isnt easily demonstrated. My MEA post re: The Lancet article responses (40+) was ironic, I used the same intemperate type of language I was arguing against, though I suppose no one noticed. Still it amused me as at the time I was annoyed by the co-incidence of The Lancet gangbanging, with my attempt at reasoned discourse with potentially sympathetic politicos. Given the politicos are legally obliged to take advice from a medical bureacracy, the chances of obtaining any credibity for a pro M.E advocacy perspective was greatly reduced in the week when The Lancet was furnished with plenty of material to back up the Wessely cry of medico-terrorists at the gates'. Still so long as a few self selected true M.E advocates got to exercise some personal discontent by hurling diatribes at the medical profession I guess everything is in balance. Or not.

    IVI
     
  2. Dolphin

    Dolphin Senior Member

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    I am not exactly sure what you are saying: If the following is describing the letters and in particular the letters that were published, I'm not sure I accept it (it's hard for me to remember every word but generally they weren't intemperate):
    Just because the editor tried to classify them in a certain way doesn't mean that that is a true reflection of their content.

    If the Lancet thought they were useless, they didn't have to publish them.

    My guess is what irked the Lancet editor more was the work he had to put into responses through other challenges e.g. through the Ombudsman, claims that the paper should be retracted, etc.

    Also in general, relatively few letters have been submitted to journals on ME/CFS over the years so I don't believe they are the cause of our problems. Also, as I say, if editors don't think letters are of good quality, they don't have to (and generally won't) publish them.

    Technical criticisms are what help make good science.
    And I would say the correct forum to raise technical concerns is through the literature such as "letters to the editor" if people are able. It seems more appropriate than, say, in conversations with politicians or whatever. Papers get criticised all the time and generally the editor stays out of it.
     
  3. Esther12

    Esther12 Senior Member

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    What a tedious mis-characterisation. In an ironic and knowing way again? It would probably be worth trying to move beyond that at some point.
     
  4. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Detailed deconstruction ofthe advocacy response to The Lancet article isnt something Im inclined to invest in at this time the MEA thread was an opportunity for a brief expression of dissatisfaction in the face of the usual gallery applause. In terms of what has been expressed here, there is clearly a profound divergence of perspective, which I think can be usefully located on this point:
    Technical criticisms are what help make good science. And I would say the correct forum to raise technical concerns is through the literature such as "letters to the editor" if people are able. It seems more appropriate than, say, in conversations with politicians or whatever. Papers get criticised all the time and generally the editor stays out of it.

    The idea that a patient population or individuals exercising patient advocacy has any viable capacity to effect criticisms that in any way substantively help make good science seems to me to be bordering on grandiosity. The role of the amateur must always be exercised with caution when claiming equality with professionals, the amateur (unless of the highest demonstrable professional capacity) will always be subject to professional tolerance. In the case of The Lancet, to attempt to both criticise the publication and its editor, and have a mass of non subscriber correspondence taken seriously was doomed to failure, given the absence of any strategic approach.

    The comparison with news media doesnt really hold but in any case to assert that generally the editor stays out of it is patently wrong - in the UK criticising a newspaper or its owners can get your phone hacked and your life dissected by private detectives. The Lancet didnt need to do a Murdoch, it simply used the resources available to it, to announce (albeit in guarded terms) that M.E/CFS advocates were enemies of science. Those who think the PACE/Lancet campaign has been a success for making good science might like to start researching how GP attitudes have changed post the Lancet publication some evidence of increased scepticism over the value of CBT would be a measure of success. Of course reduction in scepticism would be evidence of failure.

    Unlike scientists, politicians and bureacrats are under some obligation to take patients and patient advocacy seriously. Politicians have influence, even if only at arms length, over research funding, and also critically in relation to socialised health care (UK NHS) influence over the structure of service delivery. The scientific validity of PACE was never vulnerable and those who tried to present it as such have misled themselves however PACE holds within itself the seeds of the demise of CBT and GET not from a scientific perspective but from a political and an administrative perspective. PACE has shown how neither CBT or GET are cost effective interventions for M.E/CFS, thats a political issue, even more significant in political terms is the huge cost of PACE 5 million, and for what ? The question now though is who has the credibility to push the cost question forward in the political sphere ?

    IVI
     
  5. Dolphin

    Dolphin Senior Member

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    You're entitled to your opinion. I'm not inclined to believe it. Also few if any of the letters criticised the editor for publishing the piece. I believe it was unusual for an editor to write the way he did - it's not something one sees often in medical journals. And I believe it was more likely due to other factors such as complaints about the paper being published, the call for it to be retracted, and other initiatives that took more of the editor's time. Submitting letters doesn't hurt an editor - he/she doesn't have to publish them.

    People including researchers and scientists don't always remember where ideas, critiques, information, etc. come from. If criticisms are put out there, they can spread - a criticism that has validity can be picked up by people with more "authority" as you might call it.

    An indepth examination of the PACE trial took a lot of time, something professionals often don't have. It took "amateurs" to research and elucidate some of the flaws in the paper, some changes from the protocol, etc.

    Sometimes, it takes a "little boy" (or girl) to point out that an emperor has no clothes. We can't depend on professionals to write letters criticising articles - the evidence from the past is that they don't do it very often.
     

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