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    A series of PACE funding FoI requests

    One must probably start with the assumption that those currently responding are stating accurately what the accounts appear to show. Can afurther FOI be made requesting further and better particulars of the £1.6 million payment, specifically the dates and method of payment. It has to be...
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    Blog: Murky matters involving conflicts of interest

    Is that information available separately to what was said to have been done and found?
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    Esther Crawley's contribution to #MEawarenessweek

    Who is it again that is ill with the dissociative disorder?
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    World ME Alliance, was previously IAFME: International Alliance for ME

    One can test the seriousness of this project. Has there been agreement between the international members as to the likely costs budget needed, and the division of those costs between members? If not, is Afme picking up the bill in return for the use of the names of the others? How often would...
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    Jeremy Vine (BBC radio2 discussions)

    If we hear more of him, how long do we expect it to be before the name undergoes a reversal?
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    BBC: Chronic fatigue syndrome treatment 'should be withdrawn'

    What do we presume the procedure would be? BBC contacts SMC. Does SMC then contact the duty psychiatrist and ask for a stock a see, or do they have the stock response on file? So who wrote this? Which of them cannot distinguish between infer and imply? Do they then go to the trouble of...
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    BBC: Chronic fatigue syndrome treatment 'should be withdrawn'

    Investigative reporting at its best. ....evidence that these treatments are safe and useful for some patients. I suspect that the average twelve year old could spot the potential follow up questions.
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    Ideas For Marketing ME More Effectively...

    I presumed that the "living dead" suggestion wad an Aussie wind-up. Apparently not. Does no-one remember the sketch-perhaps it was "I'm sorry I'll read that again", which ended "and he joined the ranks of the living dead....yes,he became a Chartered Accountant." Apologies to chartered...
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    World ME Alliance, was previously IAFME: International Alliance for ME

    It is worth mentioning that although the language here is of "linked organisations" the Welcome page of the Forward MEwebsite talks of membership. It also says that members are free to opt into activities. That is not much of a freedom unless they are informed what the activities are. If...
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    World ME Alliance, was previously IAFME: International Alliance for ME

    We must all have been ill that day.
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    Patients with chronic fatigue syndrome do not score higher on the autism‐spectrum quotient than healthy controls, 2018, Bileviciute‐Ljungar et al

    I once came across a comment which may have general application. The comment was to the effect that the only people with the skills to understand and interpret answers to questionnaires have no need of them. Edit. Questionnaires, that is, not skills.
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    'I'm not looking for pity, just a cure' - NZ article

    I realise that this was not the object of the post but what immediately struck me was how readily reference to the heart can be seen to be metaphorical. In contrast the concept of mind is rarely seen in the dame way, despite the explanations of Gilbert Ryle.
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    UK - The Young ME Sufferers (TYMES) Trust

    It is revealing when one discovers the history of those whose judgment one trusts on the subject of ME. Strange that they all turn out to be people the "experts" would have us believe cannot be relied on.
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    Esther Crawley's contribution to #MEawarenessweek

    Is online treatment what "kids" receive when they've been hung out to dry?
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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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