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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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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    I think their policy for publishing data is on the OMF website. The Naviaux data is on there, and was put on very quickly.
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    Good point. Thanks.
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    ok thankyou.
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    Hmmm. I have a couple of hundred contacts on LinkedIn. If I can find somewhere online that's freely accessible with the transcript, that would make it easier to do a LinkedIn post - people often can skimread a document when they don't have time to watch a video. If anyone can tell me a place...
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    I used to work in Financial Services in London, I'm making sure my friends are aware. You never know when employees are going to be asked for suggestions of charities/ community funding opportunities for big biz to tick their 'community caring' box as part of their corporate responsibilities...
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    Possibly a stupid question - is the transcript on Facebook anywhere? I'm in a couple of ME/CFS groups who have people who have trouble with videos. I'd like to be able to share it there.
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    I am so excited about this. But scared also, because feeling optimistic about there being treatment or a cure is a very hard thing to have if it turns out to be false. A little voice says 'what if this person is wrong, and the results are not what they think they are'. But mostly though, I'm...
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    Fitbit or similar - could it be of use? and how?

    There's not been much on fitbits recently. I've read the other threads PR showed me. I've just seen a comment on Julie Reymeyer's Bad Science on the Pace Trial - where they said they use a fitbit. To monitor activities. To help them not exceed their energy levels. I've tried a pedometer in the...
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    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    That manic urge to do stuff? I've realised that for me it's like things hurting or feeling sick or dizzy, it's one of the symptoms and also a warning sign that I'm doing too much. It took me ages to realise it was 'false' energy and not available for using. I use an egg timer. 10mins rest...
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    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    One thing I had sort of forgotten in the intervening years until this all came up again (for me) after Mr Tuller's work was how annoyed I was that I wasn't better. I'd put all that effort in and it hadn't work. I felt I'd been sold a pup. I do still feel that when delivering CBt or whatever...
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    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    On the placebo effect, isn't that one of the things David Tuller raised in his virology essay - it can't be placebo cos you can tell the difference between what you're being told and actual reality? so it doesn't really work? Certainly they said 'we don't have a magic bullet but we think we can...
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    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    Oh this may explain why Mr Tuller seemed so very cross in his latest Virology post. He was far more stern than I expected. Especially because best practice for clinical trials is pretty central to his day job (academically speaking) and he knows what he's talking about. So when Wessley etc...
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    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    Also I think Participants probably wonder what people will say if they say they were on the Trial. Cos people can be horrible trolls online. And if one is struggling, better to keep quiet than be bashed...
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    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    Yes they have re silent voices. For me, I was working in financial services in London. Without my super supportive boss, I would never have been able to go on the Trial. The 'climate' I was working in, I would not have been able to continue my career had employers had any inkling of the health...
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    "News" 8 Sep 2016: PACE trial team analyse main outcome measures according to the original protocol

    Yes @Dolphin I will.
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    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    I don't mean that what Alem was doing arose from DAvid's work. Cos Alem did the FOI request first, what I mean is that independently Alem and David's work dovetails to make the case for criticism far more strong.
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    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    However, the Virology guy was the only one willing to take a punt on David Tuller's Epic 14K word Trial critique, he tried other places first, including Retraction Watch (bet they are wishing they'd not played safe now and rejected it at the eleventh hour lol Maybe they'll pick up subsequent...
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    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    It HAS got authority - it's got 2 professory type people who teach medical statistics, and also David Tuller who teaches things like how to run Medical Trials according to best practice (nope got confused Tuller isn't mentioned in the paper, it's cos I saw it on his FB feed. My brain is mush...
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    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    I was on the Trial CBT. I asked for the SMC several times cos I wanted to discuss things like symptoms I had and how to deal with them like pain. Never got it. Ended up thinking the signoff to the Trial session was the SMC, it wasn't. The person running that session was the SMC person so tried...
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    Coyne: Why patients should not enroll in a clinical trial of video gaming treatment for CFS

    My OT suggested I play Patience (the one that comes with Windows) to help my motor skills and for my brain to make connections. I find like you guys, I can sort of do things I already know about, but new stuff.Nope! I play Diggy's Adventure. It's not terribly interesting - you click to dig...
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    The PACE data have been released (9 Sept 2016)

    To fulfill the court order, it would have to be in his hands before teh deadline. If they haven't, depending on what the order said, it is enforceable either in that tribunal or a different court. But I can't imagine they'd not fulfill the order, QMUL that is.
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    "News" 8 Sep 2016: PACE trial team analyse main outcome measures according to the original protocol

    Sorry I've just realised the cherry picking thing was responding to what you said. What I'm trying to say is that to a certain extent participants picked themselves. Or rather self excluded themselves. It's pure supposition but I'd imagine only moderately or mildly affected people could have...
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    "News" 8 Sep 2016: PACE trial team analyse main outcome measures according to the original protocol

    I wish I'd paid more attention at the time now! and kept copies of stuff. But I didn't. I was on the CBT arm. I remember at the end there was a final therapist session, and a session of signoff for the end of the Trial. This I remember vividly cos I thought it was the promised SMC that I'd...
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    The PACE data have been released (9 Sept 2016)

    They know how many people dropped out. Didn't one of their papers mention it? And one person aftewards said they couldn't use their data, sot hey had to redo everything (at the time I thought, pah, they should have built their results architecture more flexibly). However, what has occurred to...
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    The PACE data have been released (9 Sept 2016)

    Medical negligence might be a possibility if they knowingly inflated Trial results and these were taken at face value and applied. But not sure that crosses international boundaries. And anyway they got permission/ agreement for their changes to the protocol, they didn't just do it willy nilly...
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    The PACE data have been released (9 Sept 2016)

    I should point out I don't actually go around dropping bricks on people. EVER! mutters not least cos I can't lift em. But also, I'm not a violent person. :)
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    The PACE data have been released (9 Sept 2016)

    Criminality in the UK requires mens rea (intention) and actus reus (an actual act or omission). You have to have both. This means that people who intend to hurt someone or something but don't actually do it, they aren't criminals (ie thinking how nice it would be to brain the noisy neighbour...
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    "News" 8 Sep 2016: PACE trial team analyse main outcome measures according to the original protocol

    Hmmm I've now read teh rest. I'd completely forgotten what the questionannaires actually asked. Yes they may have asked if you can do certain things physically. As to the question about 'do you have trouble starting things' - I don't have any cogent proof as to why I think this, but in my mind...
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    "News" 8 Sep 2016: PACE trial team analyse main outcome measures according to the original protocol

    Getting 'worse' should show up, for example in the 6 minute walking test. I distinctly remember I did far fewer setps in the second and third ones than the original one. Same for the tramping up and down a set of mini stairs. But they didn't do the ankle braclet more than once, so that has a...
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    PACE re-analysis and NICE guidelines

    As to the 6mwt data being the most contentious from a privacy angle - those CBT sessions I did were recorded. I NEVER want to hear them myself, never mind anyone else hearing them. It would be like re-reading some dreadful teen angst filled ancient forgotten diaries I'd come across in my loft...