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  1. EzzieD

    PwME and synesthesia

    I have synesthesia, since I was a small child. I don't find that it ties up with light & sound sensitivity for me, they seem to be two separate things in my case. I have light & sound sensitivity (moderate now, was severe when I was at my most severe). But I find the synesthesia enjoyable rather...
  2. EzzieD

    UK company Neuro ProActive

    This is a very good point. Having obtained my notes a while back, I was horrified to see they consisted almost 100% of misinformation/disinformation. They list trivial symptoms I've never had, omit important symptoms I have had, making my condition sound like no big deal. One doctor described me...
  3. EzzieD

    (2022) "Weʼre raising £16,000 to Continue Dr Geraghty's Vital ME/CFS Research"

    Thank you so much for your dedication to helping those with this much-neglected disease. Your work is important and very appreciated.
  4. EzzieD

    UK Dr Anna Chellamuthu, GP and Lightning Process practitioner, and her article in a GP journal

    It's so weird how these types of articles keeping popping up since the new NICE Guidelines, I wonder if they're orchestrated by the SMC or other organisation with similar agenda? And she's a 'Specialty Doctor in Oncology'? That's very worrying. I sincerely hope she doesn't think LP will cure...
  5. EzzieD

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

    Oh my, watched it and truly feel embarrassed for both of them. Of course they disabled comments on the video. AND, YouTube has this new policy of Dislikes no longer being allowed. So that makes for a perfect little echo chamber. It's hard to understand how someone in such a prestigious position...
  6. EzzieD

    Missteps in Creating a Long Haul COVID Case Definition Unintentional stigma is perpetuated by scientists. Vernita Perkins, PhD and Leonard A. Jason

    I think if that happened to me, I'd have to give the doctor a big lecture on the meaning of fatigue. Because it sure doesn't describe my symptoms. Whereas encephalomyelitis feels like what I experience, even if there's no routine lab test result to prove it.
  7. EzzieD

    Post-infectious disease syndrome, 1988, Bannister

    Wow. The author, Dr Bannister, was my consultant at Royal Free Hospital in the 1980s after I got severe ME in 1983. My GP had referred me to Dr Melvin Ramsay there, under the impression he was still working, but he had retired and it was Dr Bannister who took the case. She was the only doctor I...
  8. EzzieD

    Physician Use of Stigmatizing Language in Patient Medical Records, Park et al, 2021

    I do know what you mean, they feel they need to couch things in vague terms unless/until they can get some lab test result that shows something really blatantly obvious, which unfortunately never happened for me. It would have at least been better, though, if what they quoted me as 'thinking'...
  9. EzzieD

    Physician Use of Stigmatizing Language in Patient Medical Records, Park et al, 2021

    Having seen my NHS notes a while back, it's full of 'She thinks she has [such and such]' or 'She feels [such and such]'. Why not simply 'She says'? It seems intended to belittle the patient's intelligence and credibility, and I can't help wondering why they do this.
  10. EzzieD

    Non-hospitalised Children & young people (CYP) with Long Covid (The CLoCk Study), 2021, Stephenson and Crawley

    Am completely bewildered as to how these authors think there's a link between serious viral illness and kleptomania. Very off-the-wall.
  11. EzzieD

    Misrepresentation of ME/CFS in Media Images: A Picture Tells a 1,000 Words. What Story Are We Telling?, 2021, McMillan et al [and 2022 update]

    Now, that's interesting. Would ME/CFS be considered a physical deficit? If so, all those newspapers using stock photos of young healthy well-groomed models sitting yawning in front of their computers as a depiction of ME/CFS, could land in some licence-use trouble? Maybe that might result in...
  12. EzzieD

    Gamers for M.E. - Play video games and support OMF

    Thanks for the Twitter link for Gamers For ME, will follow. Yes, Fallout NV had some of the best and most memorable characters ever. It was an incredibly BIG and fleshed-out game especially for something made in such a short time as it was. LOL, yes, Tabitha was certainly a great radio host. I...
  13. EzzieD

    GAS (Goal Attainment Scaling in Rehabilitation), GAS-light, and gaslighting.

    The term 'gaslighting' isn't used in the films. I'd guess that the term was just later derived from the title.
  14. EzzieD

    GAS (Goal Attainment Scaling in Rehabilitation), GAS-light, and gaslighting.

    And the 1944 one was a remake, of the original Brit film made in 1940. The 1940 one is in public domain, so you can watch it on YouTube and see the gaslighting effect in all its glory:
  15. EzzieD

    FoI request regarding an 'activist list' in the Sunday Times Magazine in May 2013

    Oh that's interesting, the screenshot I was shown looked like it was taken from a web forum, not a blog. The person who posted the screenshot said it was from a 'CFS' forum (a 'militant' one, no less). Maybe it was re-posted elsewhere as well?
  16. EzzieD

    FoI request regarding an 'activist list' in the Sunday Times Magazine in May 2013

    Yes, on a 'skeptics' web forum I used to read about 8 years ago, some members were talking about how terrible 'CFS people' were and how they were all dangerous militants, sending death threats to Wessely. I asked them for documented proof of said death threats. Long silence, then all they could...
  17. EzzieD

    2021: Communications between NICE and the S4ME management committee about the paused NICE ME/CFS guideline

    Thank you so much for all the time and effort in putting that together. An excellent letter which makes good points.
  18. EzzieD

    Gamers for M.E. - Play video games and support OMF

    Fallout New Vegas was my first BGS Fallout game (tried to play the original Fallout 1 & 2 back in their day but got stuck early on and internet walkthroughs were not yet a thing!) and loved it, now consider it one of the best games ever made. From there I went to Fallout 3, then 4. Love Oblivion...
  19. EzzieD

    Gamers for M.E. - Play video games and support OMF

    Sounds a nifty idea! Am an old gamer from way back and I make short funny videos from my games to share with friends, but unfortunately definitely not enough energy for streaming. I do hope there are a few folks who are up to it though, and hope the project goes well! Agree that Bethesda games...
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