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Developing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Enc

Discussion in 'Latest ME/CFS Research' started by Esther12, Sep 22, 2012.

  1. Esther12

    Esther12 Senior Member


    I hate these sorts of papers. Get a small group of people together, then have the researchers select the quotes they want to present in their paper. It's distressing to me that citing them in support of a point is any more respectable than citing a thread on a forum.

    The quotes they give often don't really support their preceding claim anyway, eg:

    The quote from the carer was indicating relief at having access to support, and people who may be able to help, nothing there indicated a need for the diagnosis to be given in a 'positive' way to maintain hope that symptoms can improve.

    It's probably worth pointing out that some of the researchers who wrote this paper were also involved with the FINE trial, the results from which showed their psychosocial 'treatment' to be ineffective. As part of the FINE trial a leaflet was given to patients, and it included claims like:

    “As medical research and tests have shown, there is no hidden disease: therefore activity can do no harm when performed at a level matching your fitness.”

    “On Restarting exercise after a cold or setback it says : Symptoms may increase again causing fear of relapse, but remember these are the symptoms of physical deconditioning, nothing else."

    So these people are perfectly willing to make rather bold assertions to patients. They followed up their FINE paper with a paper which mentioned that their approach to CFS had led to their therapists believing of CFS patients "The bastards don't want to get better". That the patients given their psychosocial pragmatic rehabilitation improved no more than those in the control group
    might have led to some soul searching from those responsible, greater acceptance of their own ignorance, or ideally, resignations.

    It seems that's not happened.

    This is straight out of FINE. The practitioner certainly should not provide patients with an explanation for their fatigue, because if they had an explanation for their fatigue, they would not have CFS. Explanations unsupported by the evidence are just quackery. Patients should not be spoken to in a positive way, or a negative way, but simply as clearly and honestly as is possible.

    So here they are saying that all of the causes should have been excluded before a diagnosis can be helpful... but given the number of things which can cause the symptoms of CFS, has any CFS patient ever had all of the causes excluded? Also, if a diagnosis of CFS is going to lead to patients having to put up with the sort of ineffective misleading 'rehabilitation' we saw under FINE, I don't see that as remotely empowering.

    A lot of the medical staff really seemed to have no idea about CFS, and be quite aware of and honest about their own ignorance... I was pretty impressed with them. It's much better than what I expected, as I assumed most of them would be spouting the sort of quackery that comes from Crawley.

    Unfortunately, this paper seems to have been written to justify the claim that they need to provide resources to 'educate' patients and medical staff with. None of the proposed materials were available, but judging by the FINE trial, there's a good chance that they will be misleading, make life worse for patients, and lead more people to see us as ungrateful bastards because their treatments are so ineffective.

    They just wasted so much research funding on a programme for 'working towards recovery' which failed to help patients, wasted everyone's time and energy, and left medical staff resenting patients... and they're still trying to educate others about their views on 'Health beliefs' and the 'idea of working toward recovery'. Who cares about the idea, when they fail so badly at the reality?
    biophile and alex3619 like this.

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