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    World ME Alliance, was previously IAFME: International Alliance for ME

    This is presumably all being done in response to the clamour from people with ME that what they wanted more than anything was an additional layer of unaccountable bureaucracy. Who exactly do you call if you want to speak to the new organisation? Have we ever managed to discover to whom Afme is...
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    World ME Alliance, was previously IAFME: International Alliance for ME

    If you are trying to carve out for yourself a new career, it is inadvisable to share, too early, information which might put a stop to it. Edited for punctuation.
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    Esther Crawley's contribution to #MEawarenessweek

    Is there a study under way testing the curative effects of emesis?
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    FoI request regarding an 'activist list' in the Sunday Times Magazine in May 2013

    Was it entirely coincidental that the person interviewed to support the claims was Colin Blakemore, who must be the person with the greatest experience of genuine harassment?
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    Re-framing GET as pacing, or vice-versa

    You clearly had not got the idea of graded exercise therapy at that early stage. You needed a smaller,lighter envelope. If necessary you should have sent half the letter the following day.
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    World ME Alliance, was previously IAFME: International Alliance for ME

    Thanks for the update. I suspect that we have all learned something from this sorry tale. Reverting to the subject of Afme advocacy in Geneva, the question that will naturally arise is to what extent is Afme strategy independent of Forward-ME? Do these developments mean that Afme will be using...
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    FoI request regarding an 'activist list' in the Sunday Times Magazine in May 2013

    What's all this? Someone says they have a list? I'm appalled. Appalled. It's a death threat, I tell you. These allusions that they all like. Much less obscure than GBS. Gilbert and Sullivan. The Mikado. Ko-Ko, the Lord High Executioner. Of society offenders who never would be missed, I've...
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    WHO ME/CFS coding - April to May 2018

    The question which clearly now arises is: What action could Forward-ME take to persuade the informed patient population that it was receiving and acting on best advice in this controversial issue. I always find the lack of full stops in ME disconcerting.
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    A unifying theory for cognitive abnormalities in functional neurological disorders, Fibromyalgia and CFS (2018), Mark J Edwards et al.

    From as long ago as 1922 in the shell shock report the terms "functional nerve disorder", "neurasthenia" and "neurosis" seem to have been used in such a way as to suggest that they were synonymous and interchangeable.
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    WHO ME/CFS coding - April to May 2018

    @DXrevisionwatch I am sure you will not feel obliged to answer this query if you feel constrained on the matter. Is the problem one of substance or of form? Is it about what has been said or written, or is it about how and where it appeared? In either case one would have expected a more...
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    ME Association - Forward ME – Meeting with Dr Diane O’Leary about possible WHO coding changes - 21 April 2018

    It would be interesting to know from whom Forward ME are taking advice, or proposing to take advice, on the complex issues of coding, now that they have dispensed with the services of their generally acknowledged expert. Do they have a plan?
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    BBC: Chronic fatigue syndrome treatment 'should be withdrawn'

    Could it be that rather than seek a response to this new intervention the been is simply quoting the response on a previous occasion that some similar point was made. Does anyone recall what was the last occasion that a group of alleged experts issued such a statement?
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    BBC: Chronic fatigue syndrome treatment 'should be withdrawn'

    There seems to be a problem with "a statement" from "some leading researchers". What could be the process by which the BBC obtains such a statement from a group acting in concert. Does anyone believe that they contacted one researcher who phoned his friends to agree this? I agree with those who...
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    WHO ME/CFS coding - April to May 2018

    I must have been confused. A touch of the sun. Sorry about that. I am very sorry to see the way matters have unfolded, after all your work, on this subject which will be beyond the current reading endurance of most of us. One understands that tensions and disagreements will always arise...
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    WHO ME/CFS coding - April to May 2018

    Was I hallucinating yesterday when I imagined I saw another thread on a related subject, but of which there is now no sign. If the removal was at the request of the original poster, having had second thoughts, that would be absolutely fine. The only concern would be if there were some degree of...
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    (Not a recommendation) CFS or where is my stocking?

    @Bill I wonder whether you have looked at Ramsay's definition of ME recently. It is possible that you are under a misapprehension. He said that in less severe cases "muscle tenderness may not be so easily elicited but careful palpation of ....the muscle groups most commonly involved with the...
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    Independent: I'm suing the police because they labelled me an extremist and barred me from doing my work

    He should consider himself fortune that they did not send a big, hairy constable to seduce him.
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    Report harassment or risk losing funding, says top UK science funder

    I suspect that they are only concerned about behaviour of one researcher towards another member of the team.
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    Electroconvulsive Therapy

    Some might regard the reference to "scared laymen" as potentially pejorative. Not to mention "cavalier".
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    (Not a recommendation) Bath University, Volunteer for research investigating Chronic Fatigue Syndrome

    You would think that the original findings would have caused them to double and treble check the conclusions - unless they were more than happy with them.
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