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  1. Ariel
    Post

    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    ITV piece on Millie situation aired tonight. Local news I think....
    Post by: Ariel, Apr 9, 2024 in forum: General ME/CFS news
  2. Ariel
    Post

    United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

    Re: Steve Topple piece If we protest or complain this often has a negative effect on people's perceptions of "the community" i.e. ME patients as...
    Post by: Ariel, Apr 9, 2024 in forum: General ME/CFS news
  3. Ariel
    Post

    NHS England web pages on ME/CFS updated 29th October 2021 (NICE publication date)

    For me the main problem is that PEM is not under the main symptoms on page 1. I have no idea how this happened. None of the statements are a...
    Post by: Ariel, Jan 29, 2024 in forum: UK clinics and doctors
  4. Ariel
    Post

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I have been unable to follow some of this; is anything happening/is there any movement? Is it just more delay or is it saying the review will stay...
    Post by: Ariel, Nov 10, 2023 in forum: 2021 Cochrane Exercise Therapy Review
  5. Ariel
    Post

    Closed UK: DecodeME updates, was recruitment thread.

    I had to redo my sample as it had not been extracted properly apparently. But i sent it off a while ago and it was received. Should I be worried...
    Post by: Ariel, Nov 10, 2023 in forum: Recruitment into current ME/CFS research studies
  6. Ariel
    Post

    UK: NHS website: Myalgic encephalomyelitis, chronic fatigue syndrome ME/CFS

    Is there any hope of eg the charities flagging this issue in their materials to put pressure on NHS England to change the website before whenever...
    Post by: Ariel, Aug 12, 2023 in forum: Resources
  7. Ariel
    Post

    UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

    Who at NHS England will be responsible for the content of this? They have not been good on various matters re: the pandemic, and SW is on the...
    Post by: Ariel, Aug 9, 2023 in forum: News from organisations
  8. Ariel
    Post

    UK: People with ongoing Long Covid symptoms unable to donate blood (as of July 2023)

    I feel like in the UK they never acknowledged this as part of LC officially? (Unlike in the US, where they did.)
    Post by: Ariel, Aug 9, 2023 in forum: Long Covid news
  9. Ariel
    Post

    Long Covid in the media and social media 2023

    [MEDIA] EDIT: Janet Dafoe: "The director of Dr Tedros’ office just called me. Ron and I spoke with her at length. She is lovely! We were able to...
    Post by: Ariel, Aug 4, 2023 in forum: Long Covid news
  10. Ariel
    Post

    Cochrane Exercise Review Withdrawn - Individual Patient Data

    I am a bit lost. Is that what is happening? If so, what?? Can someone explain; I am really sorry. :(
    Post by: Ariel, Aug 1, 2023 in forum: Psychosomatic news - ME/CFS and Long Covid
  11. Ariel
    Post

    A new consensus? - ME/CFS skeptic blog

    As far as I was aware there isn't anything that "CBT" actually is, and that pretty much anything can be called "CBT"?
    Post by: Ariel, Jul 27, 2023 in forum: ME/CFS research
  12. Ariel
    Post

    Ed Yong: Articles on Long Covid, 2023

    [MEDIA]
    Post by: Ariel, Jul 27, 2023 in forum: General ME/CFS news
  13. Ariel
    Post

    Rates of Prolonged Grief Disorder: Considering relationship to the person who died and cause of death, 2023, Thieleman et al

    Thank-you for posting this. I have no words at present!
    Post by: Ariel, Jul 22, 2023 in forum: Other psychosomatic news and research
  14. Ariel
    Post

    Coenzyme Q10 Benefits Symptoms in Gulf War Veterans: Results of a Randomized Double-Blind Study, 2014, Golomb et al

    Anecdotally I have found CoQ10 to be helpful. It didn't do anything when I tried it at lower doses; 800 mg per day was what I used. I now take...
    Post by: Ariel, Jul 14, 2023 in forum: 'Conditions related to ME/CFS' news and research
  15. Ariel
    Post

    Well-known, famous people with ME/CFS (public thread)

    Rolling Stone headline refers to "Tiring illness" re: Marina :( :( [MEDIA]
    Post by: Ariel, Jul 13, 2023 in forum: General ME/CFS discussion
  16. Ariel
    Post

    Well-known, famous people with ME/CFS (public thread)

    Exactly. To be honest this is the sort of reason I unfollowed her socials. I think she studied this stuff either beforehand or as a response to...
    Post by: Ariel, Jul 13, 2023 in forum: General ME/CFS discussion
  17. Ariel
    Post

    Preprint Genome-wide Association Study of Long COVID, 2023, Lammi et al.

    Are there any similar studies happening so that this result could be replicated; does anyone know? I was really disappointed that the Ponting-led...
    Post by: Ariel, Jul 13, 2023 in forum: Long Covid research
  18. Ariel
    Post

    Well-known, famous people with ME/CFS (public thread)

    Wow. I really used to like her music at one point and a couple of her albums in particular; I saw her perform when I was feeling better in the...
    Post by: Ariel, Jul 13, 2023 in forum: General ME/CFS discussion
  19. Ariel
    Post

    How Might Benzodiapines (Ativan, Clonazapem) help with ME/CFS?

    I take benzodiazepines and they have been some of the most helpful medications for me, much more so than many other things I have tried. I have...
    Post by: Ariel, Apr 4, 2023 in forum: Drug and supplement treatments
  20. Ariel
    Post

    OpenAi's new ChatGPT

    Can this be waived, or? I am interested in what you have to say.
    Post by: Ariel, Mar 28, 2023 in forum: Other health news and research
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