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  1. Trish

    RECOVER-TLC seeks input on planned study of possible Long COVID treatment

    I think we have seen at least 2 recent anecdotal reports of serious worsening following stellate ganglion block, and clinical trials being small and unimpressive. I'm sorry I don't have the energy to search for them.
  2. Trish

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Your link doesn't work for me. I googled Charity Commission BACME and got straight to their page. The BACME website gives information about board members, what BACME does etc.
  3. Trish

    A thread on what people with ME/CFS need in the way of service

    Some of us don't live anywhere near a major university research hospital where research and leading clinics are likely to be centred. I fear we will be left out of any specialist doctor led care services which are being rightly described as needed. The difficulty with travel becomes magnified...
  4. Trish

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    I thought Forward ME was an organisation run by and for some of the UK national ME organisations. I don't think BACME is part of it. I hope someone can clarify. I understand though that BACME have been very involved in the government planning for ME/CFS provision.
  5. Trish

    Guardian: "My maddening battle with [CFS]: ‘On my worst days, it feels almost demonic’" - [mentioning but not endorsing (?) brain retraining]

    I think it's clear from the article that her trial of brain training seemed successful to her at first, but when she relapsed again she looked back and realised the remission simply coincided with her usual pattern of remission followed by relapse. She acknowledges it's woo just like all the...
  6. Trish

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    When I read your news of today's meeting today I felt like giving up. Then I thought, no actually there is work to be done. You have made a good start on that with your letter to BACME. Our fact sheets are helpful too. So what is needed now is some way to persuade the people running the...
  7. Trish

    United Kingdom: ME Association news

    That felt like our last hope. It's devastating but also unsurprising. We are up against too many people with power. And I lay a significant amount of blame on the MEA with its active support of BACME clinics and its ridiculous funding of the Tyson clinical tool kit. How can we hope to get...
  8. Trish

    Long Covid Advocacy (Substack blog)

    I'm a bit confused. Is Long Covid Support a problematic charity and Long Covid Advocacy a separate thing?
  9. Trish

    Rates of likely neurodivergence and variant connective tissue in patients with chronic pain/chronic fatigue: a case-control study, 2026, Quadt, Eccles

    Online recruitment, sample far too small for epidemiological study. As soon as I saw the article title I guessed it would be Jessica Eccles research group. The conclusion is far too certain for such weak data.
  10. Trish

    Preprint Development and psychometric evaluation of The Index of Myalgic Encephalomyelitis Symptoms TIMES Part I…, 2026, Horton, Tyson, Fleming, Gladwell

    The Tyson project was initially awarded £90,000 by the MEA. They were recently awarded another chunk of money to expand the project. I think it's another £50,000, to expand the Clinical Toolkit. I'm not sure whether that means more questionnaires, or associated materials and supporting...
  11. Trish

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    I suspect when people call for multidisciplinary clinics they are imagining seeing a range of doctors from different specialisms to investigate and treat their symptoms in different parts of the body. They wait months or years, only to find it's an online group short course run by one of a...
  12. Trish

    The Boston Globe: A doctor watches his 28-year-old daughter suffer from long COVID. He clings fiercely to hope.

    I think it's a good article, spelling out the reality of living with severe ME/CFS/LC. And the risks of trying the latest fashions in unproven treatments.
  13. Trish

    An Open Letter to BACME re ME/CFS Guide to Therapy 2025

    So from the perspective of Sivan's Long Covid Clinic he would presumably claim the rehabilitation is restoring people to health after Sars-Cov-2 infection. Which is nonsense since they have no evidence they are restoring anything.
  14. Trish

    Preprint Development and psychometric evaluation of The Index of Myalgic Encephalomyelitis Symptoms TIMES Part I…, 2026, Horton, Tyson, Fleming, Gladwell

    We asked about that in the early stages of development of another of their questionnaires that tried to ask about function. They insisted their idea was better as it was asking about what people have actually done, ratiher than what we think we can do, or something. The resulting questionnaire...
  15. Trish

    UK: ME Local Network

    Yes, I hesitated to fill it in because the invitation seems to imply it's just for people currently using an app, which would tend to be people who think they are useful, or haven't been using them for long, so haven't necessarily realised how limited they are. I decided to do it because I...
  16. Trish

    Preprint Development and psychometric evaluation of The Index of Myalgic Encephalomyelitis Symptoms TIMES Part I…, 2026, Horton, Tyson, Fleming, Gladwell

    Oh, sorry, PEM is asssessed by the separate PASS (post activity symptom scale) questionnaire created as part of this multi PROMs project. I wouldn't expect that to necessarily be mentioned in this paper which seems to be all about the statistical shenanigans that allegedly make this...
  17. Trish

    Preprint Development and psychometric evaluation of The Index of Myalgic Encephalomyelitis Symptoms TIMES Part I…, 2026, Horton, Tyson, Fleming, Gladwell

    They explain that by having a separate questionnaire about PEM. I agree it makes no sense to do it that way.
  18. Trish

    UK: ME Local Network

    I assumed it was meant only for people who use apps, so they can report on their experience.
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