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  1. EzzieD

    Who is Simon Wessely?

    Who are these 'groups' of which he speaks, if they are not patients? Sheesh.
  2. EzzieD

    People affected by post-COVID-19 fatigue recover more slowly than those suffering from chronic fatigue syndrome, Rossello, 2021, current study

    Er, what? As Wonko rightly pointed out, nobody has had LongCovid for decades yet, so how can the two recovery rates be compared? This indicates that they don't know what chronic fatigue syndrome is, which does not instill confidence in the rest of the study...
  3. EzzieD

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

    Hee hee, I love that reply. Lots of good replies in that thread.
  4. EzzieD

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

    That was posted by Sten Helmfrid on Twitter - marvellous work!
  5. EzzieD

    Trisha Greenhalgh on ME/CFS and Long Covid

    He also supports Phil Parker, Henrik Vogt, everyone on the BPS/LP/'positive thinking cures illness' side of things. I'm blocked by him on Twitter for some unknown reason but can see his posts if I'm not logged in. (Not really worth seeing - always the same 'mind and body are all one' stuff...
  6. EzzieD

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

    Me too, I think The Universe must really not like me one bit. Was it something I said? I do try to be nice! His movements have been notably erratic: first believing in ME-related advice such as pacing, finding it very helpful and expressing thanks for the help, then a few months later he's...
  7. EzzieD

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

    This is exactly what hit me too, about his recent public comments; he sounds like something out of The Secret. I haven't read the book but saw the film, wholeheartedly recommended to me by a good friend (an intelligent professional who really should know better) who totally believes in it...
  8. EzzieD

    Weʼre raising £35,000 to Continue Vital ME Research, Keith Geraghty, 2021

    Donated. Thankfully they take PayPal, which is great for those of us who can't or won't use credit/debit cards online. Truly hope he meets his goal! :emoji_fingers_crossed:
  9. EzzieD

    BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

    I never expected for a moment that there wouldn't be HUGE pushback, of immense resistance. It was depressingly predictable; too many careers and reputations, awards received, etc are at stake to either simply keep quiet or, miraculously, to accept they had got it wrong and that things need to...
  10. EzzieD

    Edward Shorter’s view of Chronic Fatigue Syndrome

    This is exactly what strikes me about him and also various others such as Rod Liddle, etc - why this obsessive fixation on ME/CFS? Why the apparently overwhelming need to belittle and insult - they just seem unable to control themselves? I'm sure it speaks volumes about their own psychological...
  11. EzzieD

    What symptoms of ME that you personally experience is (a) not shown on your medical file and/or (b) not in the ME literature.

    None of my symptoms are recorded in my NHS medical records (from what I've seen by obtaining a copy of my notes), just a diagnosis of 'CFS' and referral letters from the GP surgery to consultants in which they use trivialising terms such as 'she has vague symptoms of fatigue and palpitations'...
  12. EzzieD

    "No More Mr NICE Guy…" by Prof. Brian Hughes

    I was able to see his account yesterday - just took a look and see he's now made his account Protected. So you have to send him a Follow request in order to be allowed to see his tweets (if he approves the request). ETA: His account is now un-protected again!
  13. EzzieD

    Livestrong: 5 Tips for Maintaining a Fitness Routine With Chronic Fatigue Syndrome

    "But this article was sent to me. Thought it would be helpful post Covid" Sheesh. She really is taking the mickey now - she can not possibly think that, after everything she has been told by sufferers about their lived experiences. (She has said she believes in 'lived experiences', right?) I...
  14. EzzieD

    Best ME charity to support on Amazon Smile?

    Thanks, @Andy! I'll go and switch to them, then.
  15. EzzieD

    Best ME charity to support on Amazon Smile?

    Ah, that's interesting, I had been supporting ME Research UK through Smile, which I'm guessing is a good choice, but I know more about the ME Association and would like to choose them but didn't see them as an option. I do get a hit of "The Myalgic Encephalopathy Association Limited" upon...
  16. EzzieD

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

    Yes, I remember the name was changed from ME to CFS here in the UK in 1996; here is a clip of a TV news report from the time. 'So it's goodbye ME, hello Chronic Fatigue Syndrome' :yuck: Sorry, @Guido den Broeder , but ME and CFS are simply two different names for the exact same illness. What...
  17. EzzieD

    Science for ME submission to the NICE draft ME/CFS guideline consultation, December 2020, and submission on substantive errors, August 2021

    Thank you for all your hard work in producing such a comprehensive write-up. As JemPD said, you are heroes! :emoji_trophy:
  18. EzzieD

    What is an engaging, informative, short, accurate description for ME/CFS?

    LOL, love this!! :rofl: (I am, well was, before illness, a classic car enthusiast, so can relate!) Yes, life-changing will most likely have not the desired effect. Life-destroying, more accurate. This, 100%. The way I explain it to others is 'flu-like': "Imagine the worst flu you ever had...
  19. EzzieD

    "Today’s Best Practice Will Be Rubbished Tomorrow" (CFS and CBT/GET mentioned briefly)

    Wonderful to see it expressed in that way in an 'establishment' journal, instead of the usual framing of ME sufferers as anti-science militants! A voice of reason, for a change. I do hope that sentence stays as is, and is not modified or deleted by someone making a quiet phone call to the...
  20. EzzieD

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Hooray, this is the first one I've seen so far which doesn't have Alistair Miller rebutting it at the end. Kudos to the Telegraph for that!
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