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  1. EzzieD

    Protocol Psychological risk factors for Long COVID and their modification: study protocol of a three-arm, randomised controlled trial (SOMA.COV) 2023 Engelmann

    What shameless BS. By 'chronic fatigue', is she, as so many other BPs-ers do, using that as shorthand for Chronic Fatigue Syndrome aka ME/CFS? If so, a) she's lying because that was never found to be the case, and b), I'd like to let her know that every one of us who suffer from this wretched...
  2. EzzieD

    The Epistemic Injustice of the Cognitive Behavioral Model of Chronic Fatigue Syndrome, 2023, Maciuch

    The summary looks good - the author has ME herself and is aware of, and critical of, PACE and the BPS belief systems as regards ME, and she cites the Epistemic Injustice paper by Keith Geraghty et al and the Carolyn Wilshire et al re-evaluation of PACE. It would be interesting to see what the...
  3. EzzieD

    Who is Simon Wessely?

    Having worked for the NHS for 15 years, I saw plenty of equally rude/unprofessional correspondence during that time - including ones to me or about me! It's common behaviour in the NHS, sadly... (Or was, when I worked for them. Not sure if things have improved since then, but I somehow doubt it.)
  4. EzzieD

    Who is Simon Wessely?

    Yes, 100% spot-on as regards all three points. At the time, I didn't know who 'Simon Wessely' was, so I didn't know he was a psychiatrist. I did think it strange that the patient was being referred to see a psychiatrist in our unit, it made no sense to me since ME was/is a biomedical illness...
  5. EzzieD

    Who is Simon Wessely?

    We're currently having a clear-out and packing in readiness for a house move, and among a bunch of old papers I found this copy of a letter from back when I was working at a psych unit in the 1990s. At that time, I didn't yet know who Wessely was, I just found it interesting because it was about...
  6. EzzieD

    The use of the labels ME, CFS, ME/CFS

    In my own n=1 experience, the only definition that makes sense to me is Ramsay's 1986 definition, which became the go-to definition after I got ME in 1983. This was before ME got reinvented as 'CFS' and it became all about 'fatigue'. https://me-pedia.org/wiki/Ramsay_definition#cite_note-2 . Am...
  7. EzzieD

    Psychiatry: An evidence-based text (textbook)

    What on earth? Prof Malcolm Hooper and Dr Byron Hyde are long-established, well known biomedical, not psychiatric, ME researchers and advocates. See, eg, ME-Pedia: https://me-pedia.org/wiki/Malcolm_Hooper , https://me-pedia.org/wiki/Byron_Hyde . What the heck are they doing in a psychiatry book...
  8. EzzieD

    Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/cfs 2017, Goudsmit

    Yes, it was a new tweet of his that led me to that older one! He often tweets about his having invented pacing (and in this case, standing work desks too) on various ME-discussion Twitter threads. I feel bad for him that he feels he invented it, but TBH it's something most patients (myself...
  9. EzzieD

    Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/cfs 2017, Goudsmit

    Sorry to necro this thread, I just found out the name of the Australian man I mentioned in one of my posts on the previous page who claims he invented pacing as a treatment for ME/CFS back in the 1970s-early 80s and that the idea was stolen from him without giving him the credit: For those...
  10. EzzieD

    Miguel Bautista’s CFS Recovery ‘recovery jumpstart’

    LOL! That's really the only purpose it has...
  11. EzzieD

    Miguel Bautista’s CFS Recovery ‘recovery jumpstart’

    For anyone who, like myself, is unable to see the two embedded Reddit links above, I searched and found the thread, see if this works: www.reddit.com/r/cfs/comments/15i34mh/my_personal_experience_with_cfs_recovery/ (My bold.) That would explain the many glowing comments on the above video if...
  12. EzzieD

    Trial Report The novel application of the Lightning Process to treat Long Covid in primary care - case report, 2023, Finch, Parker et al

    No, no it hasn't. In fact the NICE Guidelines explicitly say not to use it on people with ME. What a shameless lie! How the heck did this pass peer review? Exactly that.
  13. EzzieD

    Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

    Good clip, but yes, why on earth did they keep displaying 'CHRONIC FATIGUE' banners on the screen while verbally calling it ME?? It again reinforces the erroneous idea to the general public that this serious illness consists of just 'fatigue'. A good job otherwise.
  14. EzzieD

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    You can 'Quote Tweet' such people's tweets, in which you state your views on the person's tweet. Then it's at least a sort of reply even though you can't reply directly.
  15. EzzieD

    Long Covid in the media and social media 2023

    Same here, since having ME I feel more thirsty than previously, and have to 'go' much more often, and produce much more, than before. I wonder how many of us share the same phenomenon, and why that is?
  16. EzzieD

    ME patient/campaigner, Joan McParland, has been awarded an MBE

    This is such fantastic news! Really well-deserved (unlike, as mentioned above, some others in the ME field who harmed rather than helped and got knighted or OBE'd or similar...). An MBE "For services to People with Myalgic Encephalomyelitis and to their Families and Carers" is something that...
  17. EzzieD

    Alcohol intolerance and myalgic encephalomyelitis/chronic fatigue syndrome, 2023, Maciuch, Jason

    Same as @Florence . The initial viral infection at first resolved and I seemed fully recovered, then suddenly a few weeks later the symptoms all returned with a vengeance (plus new symptoms as well), at which time I found myself unable to drink any alcoholic drinks. Just a few sips would cause...
  18. EzzieD

    BBC Radio 4: The Truth Police

    Yes, the Nick Brown on the show is the data police guy, not the editor who published the SMILE trial! He's a member of this forum as @sTeamTraen but hasn't posted in a long while. He has mentioned in the past that there were problems with the PACE trial. I listened to the show and found it...
  19. EzzieD

    "Am I just tired or is it ME?" Press Association article that has been picked up by some UK & Irish media outlets

    Agree. Any doctor in this day and age who writes an article for the press which equates ME with 'or am I just tired', shockingly and wrongly claims it's "not necessarily something that will cause medical harm", and still relates it to psychological issues in face of the corrected NICE...
  20. EzzieD

    Long Covid in the media and social media 2023

    Yes, that's the Witcher 3 long COVID mod. (In German, have to enable English subtitles if you don't speak the lingo!)
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