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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. C

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    The university cleansing department must be fully operational.
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    The link between the first polio vaccine in 1934 and the first observed ME outbreak

    http://ccat.sas.upenn.edu/goldenage/wonder/Archive/Science/wd_brodie&park.htm This is a link to a paper by Brodie and Park published in 1935.
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    Can UK based school legally require me to see their doctor to get extra time on exams?

    I realise that you are enquiring about a university, which will have its own regulations, and that this does not specifically apply, but I enclose a link to the JCQ arrangements, which presumably offer a good indication of what the standard practice ought to be...
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    Prof Sir Regius Simon Wessely on Judicial Appointments Commission

    I've been saying for a long time on here that what matters is who chooses the judges.....
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    Professor James Coyne commenting on poor British and Dutch fatigue research

    Although generally excellent I am concerned at the characterisation of the events of 1988 as described at about 19.10 where he says that under the influence of the English the Americans decided that they would downplay the concept of ME and replace it with CFS. Is this not a reversal of the...
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    Mass hysteria may explain 'sonic attacks' in Cuba, say top neurologists

    The story is that shortly after criticism of typos and spelling mistakes in the newspaper an edition was printed bearing the masthead The Grauniad. It was not made clear how this happened but it was assumed to be a joke by someone involved. It has always seemed worth continuing the joke. EDIT...
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Last week I was watching a documentary about the Vietnam War. A journalist, who was there, was discussing the "metrics" of "body count" to assess who was winning. He referred to Robert McNamara's observation "measure what is important, don't make important what you can measure." He added a...
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    Help! Daughter's university doing flawed study tying parents perceived illness to students neuroses

    Was it made clear what the study was? It looks as though it might be for a third year student's dissertation, prepared with the help of a supervisor. The reaction to the questions, and the nature of the response, is probably dependent to some extent on the purpose of the questions and the uses...
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    NPR: For People With Chronic Fatigue Syndrome, More Exercise Isn't Better

    I started a thread on this paper in August, but it did not attract attention Is this a still-smoking gun? Wessely, David, Butler, Chalder -1989 Discussion in 'General ME/CFS Discussion' started by Chrisb, Aug 16, 2017. Copy thread to group
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    More from Science Medica Centre on SMILE

    I suggest that science cannot involve "black box" testing. You can do "black box" testing , but it ain't science. The contents of the black box have to be taken on trust. Trust, of this type, can play no part in science.
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    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    I think this statement shows as clearly as anything the inadequacy of Crawley's understanding of the illness. I have no doubt that there is a group for whom this is true. But equally there is another group who may find it difficult to stay awake until an hour which can reasonably be called...
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    Now that is interesting. It takes a considerable degree of self confidence to threaten legal action. Dealings through complaint procedures, and demands for right of reply are one thing - legal action quite another. Why would one be confident that the journalist would back down? One would look...
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    I urge caution before you get started on the sampler. You would like to see your opponent imprisoned for life. Do you allow him to commit a murder, which you have power to prevent, before reporting the matter to the police?
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    No concerns for any children who are made to undergo the treatment? Is that an ethical stance which we wish to adopt?
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    I think it would be wholly wrong to believe that the best tactical approach would be to ignore the SMILE trial, as some have suggested. This is exactly what its authors should wish for. One could almost hear Michael Sharpe squirming with embarrassment at having to write in support of it. Always...
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    That is one aspect of the matter. Another way of looking at it is that CS is a lobbyist for a point of view. The real losers are the listeners, who are potentially misinformed, and the licence fee payers, who are not receiving what they pay for.
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    I do not have the stomach for going back and relistening to the programme, but perhaps someone, with a better memory, can advise whether it was made clear that the "findings" related only to teenagers within certain age limits, and only when LP was offered in conjunction with SMC (specialist...
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    Which makes it all the more reprehensible that they should have given further air-time to Crawley without permitting a reply. This looks like a serious failure of their duty and worthy of official complaint.
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    This seems to confirm our suspicions. Either CS was misled when being invited to participate or there was a late change to the format. One suspects the latter. Why would such a change occur? The trailer for the programme indicated that it was to be a phone in, but CS was informed that there...
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    The former.
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Surely James must be wrong. Its only two days ago that this research was getting an honourable mention on the BBC. We know the care which they take to preserve their reputation for fairness and accuracy.
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    So do I, but what were the circumstances that entitled EC to insist on this further air-time, without having to face questioning by someone knowledgeable about the subject? Especially when an expert was conveniently at hand.
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    A brilliant new cure guys ;) Thrive programme

    Might even soon be NICE work if you can get it.
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    Does this mean that as the BBC has raised the controversial question of Lightning Process, whilst refusing to give Charles any time to be heard on the subject, it is now incumbent on the BBC to give further equal programme time to CS to point out the shortcomings in LP and the "research"...
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    That's what I suspected, but where exactly in the first part of the programme was anything that needed counterbalance from EC? What was so controversial that she needed to insist on having her voice heard? There was no criticism of her or of LP. There seems to be paranoia setting in, and the...
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    Now that the dust has settled a little it might be interesting to reflect on what this programme tells us about the BBC and its views towards ME. The impression that I had was that the first 40mins or so were good. The presenter and journalist understood and empathised with the problems...
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    Phil Parker On Wikipedia trying top get SMILE added

    I have vague recollections of someone turning up to the club caving cottage at about that time brandishing dowsing rods and saying he was going to track the course of some cave. Mind you, I suspect that it was someone known to his friends by a name which suggested that he was clean round the...
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    I thought the tiredness was obvious until we got to the advocate for LP.
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    Things must be getting desperate when someone provides a program and someone else provides a distraction. I suspect something was lost in translation. Someone may once have said that CFS was broadly created by a lot of has-beens.
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    @charles shepherd You did as well as the BBC would allow. Did they insist when setting up the program that EC should be given the last word, that Lightning process would only be discussed after conclusion of your contribution and that you should have no opportunity to question what is involved...