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    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    Okay. **picks jaw up off floor** You've got to wonder what's going on there. i don't doubt your word in the slightest but this man has gone on record endorsing stuff that is just plain wrong and harmful. Please don't think I am dismissive of your suffering @ringding but you mentioned that...
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    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    Not at all & I'm really glad to hear that your experience was positive. This is the kind of support that is badly needed. This is the issue as I see it. Not every clinic is bad & from your report this one sounds good. The snag is there are still bad ones out there. While NICE guidelines are...
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    FITNET-NHS Esther Crawley - 5th protocol out now

    £994,430......... Not even simply wasted but actively invested in making the lives of young people already disadvantaged by a great deal of suffering & discrimination worse.:cry: I'd rather see someone spend that kind of dough on shoes or handbags or something. At least it would bring someone...
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Now they just need to get their heads around the fact that the apps were problematic, some users gave up because, despite complaining that many of their symptoms weren't included in the app and were too cumbersome to keep manually adding in every day, they were ignored. By the very questions...
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    BPS attempts at psychologizing Long Covid

    From the quote in @Kalliope 's post above What he doesn't say is that the symptoms are usually exacerbated by the therapists fear and beliefs & not the patients. Especially, in the early years before a patient learns better they are very trusting of their doctors & have a lot of faith in...
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    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    And "pacing up". Baby steps but still very welcome to see them move in the right direction.
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    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    Yes they did some tests on that a few years back. More than the BPS crew have ever done despite claiming so many people are deconditioned and ill because of it. If the BPS crew were serious about it why didn't they do tests - take blood, MRIs and what have you as healthy volunteers...
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    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    As someone who has given them some stick in the past, I have to say well done & thank you to AfME for this one. :thumbup:
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    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    Yes, jobs for people with nothing to do and, apparently nothing worth contributing except to help benefits agencies and insurers to avoid paying out. What, if any, biomarkers are there of primary deconditioning by the way? Is it possible to test for it beyond exercise tests and a physical...
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    KCL: New study identifies those most at risk from 'long COVID' Oct 2020

    Can we insist that anyone, anywhere who ever considers writing a health questionnaire first has to have this tattooed backwards on their forehead so they have to read it every morning in the mirror?
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    UK Petition : Stop gaslighting chronic illness patients

    Oddly when I tried to sign the petition mentioned at the top of the thread, it looked like I had but I didn't get the usual pop up box responses. I got those when I signed the Stop Leaving Disabled People Behind one though. When I went back and did it again though it accepted my details and...
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    UK Petition : Stop gaslighting chronic illness patients

    Do you have a link for that one @Kitty? Edit - sorry I found it myself - couldn't find the search function originally. For those who want it: https://you.38degrees.org.uk/petitions/stop-leaving-disabled-people-behind
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    ME/CFS European Comparison Survey - SmartSurvey. Professor Derek Pheby 2020

    Ah.. I read that differently. I thought it meant how many of the different types of investigations you had rather than the number of each. So I have had blood tests and naff all else. It is possible if I kept turning up like a bad penny they might have been persuaded to do a scan or something...
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    Crowdfunding: Trial By Error [David Tuller]: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Fall 2020

    Well, I guess some might see it as "you have to speculate to accumulate" and a nice letter might make you put your hand in your pocket more readily next time round? Some people might only be able to donate a fiver (& they all add up) so rather annoying to thing they might be spending as much on...
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    Crowdfunding: Trial By Error [David Tuller]: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Fall 2020

    @dave30th - a question I recently received some post from Berkeley University. I get letters a couple of times a year. They're not bothersome but I would rather they saved the postage and added it to your campaign. I'm thinking if 500+ UK residents donate and all receive a couple of...
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    Chronic Fatigue Syndrome the roles of perfectionism and metacognition in co-morbid depression and anxiety, 2020, Wright (D.Clin.Psy.)

    What is maladaptive perfectionism though? In the case of a surgeon we would consider perfectionism to be a good thing. Perhaps in other walks of life where budget, time and other restraints are imposed on a person perfectionism might be a handicap. People will tend to carry over traits from...
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    Chronic Fatigue Syndrome the roles of perfectionism and metacognition in co-morbid depression and anxiety, 2020, Wright (D.Clin.Psy.)

    In my view, if this person wants to do something constructive they'd better serve by turning their focus on the people who spend their entire careers denying reality. What type of psychological traits make a person repeat the same interventions over and over, ignore and avoid the evidence of...
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    :hug:. Not at all. That's the trouble - something that's so glaringly obvious to us and yet researchers and those involved in public health and policy making (and very well paid from the public purse) seem oblivious. Even if they are genuinely that clueless over first principles those who...
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Sure, but first you have to understand what it is you're looking at before you go defining it. If you narrow your field too soon then you miss important information. It may well be necessary to make assumptions to give you a starting point but you then have to keep in mind that those were...
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