Linda's response to the BMJ

  1. Who are the real victims ?

    Because a few people are behaving inappropriately, it does not mean that the real physical needs of people with neurological ME are not a genuine issue.
    It does not mean there are not valid issues about PACE that are right to be raised.
    It does not make the findings of the PACE Trial any more valid for people with ME - and it certainly does not negate the ongoing biomedical neglect of patients, which is directly a result of the confusion that the psychiatric lobby has created , regarding the proper treatment of ME, a WHO-classified , serious neurological disease.
    Nor does it make right the implication that ME is a mental health condition requiring therapy as treatment.
    Peter White , the lead investigator of the PACE Trial, had to confirm, in a letter to the Lancet, that the PACE Trial was not studying ME (http://www.meactionuk.org.uk/Hoopers-initial-response-to-PDW- letter.htm). So where is the justification for offering these treatments for people with ME ? I can see none.
    Yet CBT and GET are still being recommended as gold standard treatments for ME ,by NICE, quite wrongly it appears then, as patients have always maintained.
    All the time that appropriate tests are proscribed for people with ME it will be difficult for patients to prove the physical causes of ME or alleviate their terrible physical suffering.
    Let us not forget who the ultimate victims in this story are . They are not the creators of the flawed psychosocial services that charade as ME services in this country, for these are the very people with the power to influence the whole of the medical profession, the Government , the MRC and the Media.
    They are the patients like myself who are suffering for decades without appropriate biomedical investigations and a genuine ME service that tries to look at and then treat the disease process .
    And all because of a quite inappropriate focus on therapy.
    Surely it is time for is the BMJ to start raising some serious medical issues about the most isolated, negated and neglected, severely physically ill patients in the UK and stop publishing a biased psychiatric representation of ME ?
    Competing interests: None declared
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