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  1. EzzieD
    Post

    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...
    Post by: EzzieD, Mar 4, 2021 at 4:55 PM in forum: Fundraising
  2. EzzieD
    Post

    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...
    Post by: EzzieD, Feb 26, 2021 in forum: Information for NICE guidelines
  3. EzzieD
    Post

    From Paralysis to Fatigue: a critical review of Edward Shorter’s view on chronic fatigue syndrome - ME/CFS skeptic

    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...
    Post by: EzzieD, Feb 15, 2021 in forum: General ME/CFS News
  4. EzzieD
    Post

    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...
    Post by: EzzieD, Feb 15, 2021 in forum: Other Symptoms
  5. EzzieD
    Post

    "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...
    Post by: EzzieD, Feb 15, 2021 in forum: General ME/CFS News
  6. EzzieD
    Post

    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...
    Post by: EzzieD, Feb 8, 2021 in forum: General ME/CFS News
  7. EzzieD
    Post

    Best ME charity to support on Amazon Smile?

    Thanks, @Andy! I'll go and switch to them, then.
    Post by: EzzieD, Feb 2, 2021 in forum: Fundraising
  8. EzzieD
    Post

    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...
    Post by: EzzieD, Feb 2, 2021 in forum: Fundraising
  9. EzzieD
    Post

    Diagnosis of ME and the use of the labels ME and 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...
    Post by: EzzieD, Dec 27, 2020 in forum: Diagnostic Guidelines
  10. EzzieD
    Post

    Science for ME submission to the NICE draft ME/CFS guideline consultation, December 2020

    Thank you for all your hard work in producing such a comprehensive write-up. As JemPD said, you are heroes! :emoji_trophy:
    Post by: EzzieD, Dec 25, 2020 in forum: Information for NICE guidelines
  11. EzzieD
    Post

    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...
    Post by: EzzieD, Dec 23, 2020 in forum: General Advocacy Discussions
  12. EzzieD
    Post

    "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!...
    Post by: EzzieD, Dec 6, 2020 in forum: General ME/CFS News
  13. EzzieD
    Post

    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!
    Post by: EzzieD, Nov 10, 2020 in forum: Information for NICE guidelines
  14. EzzieD
    Post

    Possibility of ME or PVFS after COVID-19, Long Covid

    Same here, I got what was called ME or PVS in 1983. I never heard the term PVFS until much later, maybe about 1990, and the change from PVS to...
    Post by: EzzieD, Aug 30, 2020 in forum: Epidemics (including Covid-19)
  15. EzzieD
    Post

    BPS attempts at psychologizing #LongCovid

    Hadn't heard of him, did a quick google on him and turned up this quite enlightening article from April:...
    Post by: EzzieD, Aug 22, 2020 in forum: Epidemics (including Covid-19)
  16. EzzieD
    Post

    Twitter account will provide headlines & quotes from the 1955 Royal Free Hospital outbreak to the day when each headline appeared - 65 years later

    LOL, I was struck by that phrase too, and really wanted to be able to read the rest of the sentence to find out the context of what the heck they...
    Post by: EzzieD, Jul 27, 2020 in forum: Epidemics (including Covid-19)
  17. EzzieD
    Post

    Pacing - what do you do/how would you describe it?

    For me, it was just one simple sentence I read back when I fell ill in 1983, from a book called The Mile High Staircase by Toni Jeffreys (1982)...
    Post by: EzzieD, Jul 19, 2020 in forum: Lifestyle Management
  18. EzzieD
    Post

    Video: Dr Jack Lambert - Lyme Disease and PoTS

    I'm one of those slim chances: I got ME in 1983, recovered enough to resume normal life in 1990, then got bitten by a Lyme tick (I had the...
    Post by: EzzieD, Jul 11, 2020 in forum: Infections: Lyme, Candida, EBV ...
  19. EzzieD
    Post

    Simplytreatment -U.K.

    Utterly weird - they lump ME/CFS and SAD together as if they're the same thing. https://www.simplytreatment.co.uk/me-cfs/ . They lump them...
    Post by: EzzieD, Jun 28, 2020 in forum: Alternative Therapies
  20. EzzieD
    Post

    A general thread on the PACE trial!

    Yes! That's the one I was thinking of. "They changed the recovery measure because they realised they had gone too extreme and they would have the...
    Post by: EzzieD, Jun 11, 2020 in forum: PsychoSocial ME/CFS Research
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