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  1. JemPD

    PINEAPPLE FUND INCREASES DONATION TO OMF to $5 MILLION

    thanks Joh & @Binkie4 ETA The pineapple fund website says you can "email contact at this domain" but gives no actual address ??? i dont know what that means am i being dense?
  2. JemPD

    PINEAPPLE FUND INCREASES DONATION TO OMF to $5 MILLION

    What wonderful wonderful news :) how does one go about saying thank you to them? does anyone know? I'm not on twitter or reddit.
  3. JemPD

    Efficacy of web-based cognitive–behavioural therapy for chronic fatigue syndrome: randomised controlled trial (2018) Knoop

    thank you so much for that laugh @Jonathan Edwards & @Valentijn . I was just feeling so demoralised & infuriated, feeling that this tide of bullshit will never end, i needed that giggle so much :laugh: Dont forget, that PACE was "a great great trial"
  4. JemPD

    UK: Disability benefits (ESA and PIP) - news and updates up to end of 2020

    You can read more about how this will unfold here. - they wont be reassessing anyone just trawling through the paperwork to see if anyone should have got points where they were denied on that one specific descriptor...
  5. JemPD

    S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

    My brain is mush so i wont comment on the details of whats being said here but will say that i've agreed with all the comments so far. The CFQ is a joke. It's a pity its consequences are far from funny. Well done everyone for all your comments & submission, much appreciated :thumbup:
  6. JemPD

    A history of liaison psychiatry in the UK 2017 Sharpe, Aitken, etc. Mentions Wessely taking lead on 1996 RC's CFS report, PACE an eg of 'successes'

    I cant bring myself to click the 'like' button to either of the first 2 posts on this thread, but I am glad there is a thread on this. I didn't know Richard Horton did that.
  7. JemPD

    Biopsychosocial seminar in Norway (June 2018)

    Oh God :( :facepalm: :( :banghead: I thought Norway was one of the 'good' ones, after their government apologised. So demoralising.
  8. JemPD

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    Yes sorry @Inara i realise i should have said "not that there is merely/only an abnormal amount or severity of pain/fatigue.... etc" will edit that.
  9. JemPD

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    Yes that is exactly how it is for me. Attempting to continue to exert at this point (trying to stand/crawl etc) causes vomitting, but if i can lie still on my left side for an hour or so in dark, warm, silence, I can recover enough to start moving about a little bit & talking again (if very slow...
  10. JemPD

    Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

    Exactly, exactly exactly. For example, No disrespect to the MEA AT ALL, but i always hated the way they describe one of our symptoms as 'exercise induced muscle fatigue', i mean surely everyone has that? everyone's muscles feel tired after exercise - it just depends how much exercise - & that...
  11. JemPD

    Dr Myhill’s complaint to GMC about PACE authors.

    @Esther12 @Londinium @Trish you have articulated my own thoughts & feelings perfectly Unfortunately I fear Dr Myhill & her colleagues here will be held up as "see how these idiot quacks fire-up & encourage the anti-science brigade? this is why the patients are crazy, these are the doctors that...
  12. JemPD

    Henrick Vogt: "intense negativity spread by individuals/CFS groups/researchers" partly to blame for family's suicide

    What an abhorrent, repugnant & reprehensible display of the arrogant cruelty that we know so well.
  13. JemPD

    Disability News Service: "Civil servant sparks fresh concerns over ideological basis of jobs strategy" [BPS discussed]

    Yeah it will be :eek::(:(:( They have previously not pressured people who are in the Support Group of Employment support allowance - these are those the gov't deem unable to do any kind of work related activity due to illness/disability. But the plans referred to in the article are ones to...
  14. JemPD

    Autism in France - Psychoanalysis

    Awful. But replacing psychoanalysis with ABA can in many ways be just as bad. In this article ABA sounds lovely, but one of it's aims can be to stop autistic children 'stimming' (- coping mechanism for what they find overwhelming), & train them out of their differences so they can basically 'fit...
  15. JemPD

    (Not a recommendation) Alastair Miller on CFS

    Oh i probably wrong then, i suspicious of everyone since Crawley was disingenuous about the MEA on the radio recently trying to make out they didnt want research into paediatric ME when she knows perfectly well it was SMILE they didnt want.... it's all just so underhand & sly, & it feels like CS...
  16. JemPD

    (Not a recommendation) Alastair Miller on CFS

    Just to say that Colin Barton definitely posted this on the MEA's facebook page on 28th December. I deliberately ignored it because, having posted EC's TEDx talk there on 24th Dec (-Merry Christmas!) i felt Barton was likely being provocative & trying to get a rise out of people, or get...
  17. JemPD

    What are the 'missing' research papers based on existing data that we wish scientists would write about ME/CFS?

    I cant find it. I'm sure i saw it but it was old & some yrs ago that i saw it. Perhaps i've gone bonkers & it was by someone else, but i really think it was either White, Wessely or Sharpe, because i remember thinking how they were not advertising that particular study as it didnt say what they...
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