Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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UK: Has this already been posted?

Discussion in 'General ME/CFS News' started by Francelle, Aug 29, 2010.

  1. Francelle

    Francelle Senior Member

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    Victoria, Australia
  2. Min

    Min Guest

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    Thank you Francelle; Dr Greensmith writes excellent letters although he is very ill at present.

    In the UK, the government funded large charities Action for ME and the Association of Young People with ME work very hard to support the idea that ME is a mild psychological condition (whilst giving lip service to the need for biomedical research). The Me Association sit on the fence and do nothing.

    Unlike the three large charities, , the tiny UK charities Invest in ME. the 25% Group for the severely affected, The Young ME Sufferers (Tymes) Trust and ME Research UK are working very hard for understanding of and research into ME as a serious neuroimmune illness. They receive no government funding and are severely underfunded.
     
  3. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Hi Min, I wouldn't be overly harsh about the MEA. They have just helped to bring about the soon to be introduced UK Blood Ban for all ME/CFS patients from November 2010. I loved your comment in reply to that btw about 'false illness beliefs being transmitted in the blood'! Brilliant.

    The MEA are also involved in a whole host of other helpful measures going on behind the scenes currently to get the illness fully recognised and treated as a legitimate biomedical conditon in the UK. Its a painfully slow process and I've been ill for 14 years now. I support the MEA (& ME Research UK) because they actually DO fund biomedical research and other projects such as Feasibility Studies looking at the Costs of Establishing a Post-Mortem Brain & Tissue Bank - the others just talk about it and make loud noises.
     
  4. Min

    Min Guest

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    I thought, but don't have the link, that Dr Shepherd had said the MEA would not use the Canadian Consensus Criteria to select patients for for research? If they don't, then surely they will be researching Reeves-Wessely disorder?

    I know the MEA are preferable to AfME & AYME because they do not actively support the Wesselyites like AfME & AYME do, but I still have doubts about them and the way they underplay the seriousness of ME, and would rather give my money to IiME & ME Research UK.

    Sorry Francelle to have hijacked your thread.
     
  5. Mithriel

    Mithriel Senior Member

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    That is my worry too, Min. If the patients in the study are chosen by the oxford criteria or recruited from the clinics then we are just going to get lots of negative studies that set us back years, possibly for ever.

    I was bitterly disappointed by the MEAs response to the Alter paper.

    Every statement is carefully chosen and given a slant away from MLVs being important in ME.

    The problems with the negative studies are well known, Shepherd should be shouting them from the roof tops. The Kerr study excepted, all the rest came from groups invested in the theory that ME/CFS is a somatisation disorder. As Dr Vernon of the CAA said of the CDC study, you would think they were trying not to find XMRV.

    As a single example of what I mean

    This may be true, though it rather implies that we have an underlying immune problem, itself proof that we do not have a somatisation disorder so why is the MEA not shouting about that and demanding biomedical research and treatments instead of all the money going to CBT and GET therapies which even Wessely agrees does not help over a third of patients?

    Then he continues

    No, it does not say that at all, it is not "in other words". Just because the virus is not causative, does not mean it is harmless. People often get the pneumonia bug when they have cancer, pneumonia does not cause their cancer but it can still kill.

    In fact, MLVs are known and accepted to cause cancers, immune problems and neurological problems in other mammals. Why should we be immune?

    Every time the MEA puts out a calming, soothing, let's not get excited statement I wonder why. They do some good things. I like the MEA, I was a member for a long time whereas I soon left Action for ME even before they started getting government grants and towing the party line. That's why they disappoint me so much.

    I don't think it is a big conspiracy so much. It was about 1986 I joined the MEA and the local group attached to it. It was god to meet people and the organiser was a really nice man but I remember asking him why the severity of the disease was being played down so much (and this was before I knew how bad it could get, before Lynn and Sophia). He said that newly diagnosed people want hope and it was not right to tell them how bad it could get.

    To put that into perspective, at the time it was policy not to tell people they had cancer and it was another ten years before neurologists were persuaded that people with MS should be told what they had. Accepted thinking was that people would "give up" if they knew they had a serious illness.

    That paternalistic view has, I believe, become ingrained in the MEA. Everything must be toned down and explained away, lest anyone worry or get stressed so no need to bother our heads about nasty retroviruses until they are proved to be dangerous.

    Of course, the down side is no one is going to do any work on retroviruses, or anything else, unless they could be dangerous and this attitude has allowed the authorities to ignore us and leave us to rot.

    I aloes suspect that much of the membership is now made up of people who have idiopathic fatigue rather than ME so they might simply feel a duty to represent them.

    Mithriel
     
  6. drjohn

    drjohn Senior Member

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    Thanks for posting this here Francelle and thanks for the kind remarks you make about my letters Min. For me, it is never a matter of politics, whether in the UK or in any other country or, if you mean localised power struggles or in-fighting, nor about any groups or personalities, but all about the quality of scientific method which is -- world wide -- embarrassingly poor, apart from a few notable exceptions, who then become targets because they challenge the bases on which an authoritative few make a living in a way that is keeping millions of people -- like me and you -- ill and create employment for charlatans. Long overdue for a change, don't you think? Best wishes John
     
  7. carolyny476

    carolyny476

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    Thanks you for the post.
     

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