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  1. Trish

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Early 2023. According to the November 2023 update, there are multiple stages for the protocol to go through: https://community.cochrane.org/organizational-info/people/central-executive-team/evidence-production-methods-directorate/stakeholder-engagement-high-profile-reviews-pilot-3 I...
  2. Trish

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    A reminder of a few dates: In one week's time it will be 5 years since the review was published on 2nd October 2019. On the same day the editor in chief Karla Soares Weisser announced that the new review process would be set up early in 2020. It was expected to take about two years, with the...
  3. Trish

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Thanks @Peter Trewhitt. I have just come to this thread to do the same with my recent post on the Talkpage which still awaits moderation, and email to the IAG address. Copy of email sent on 18th September 2024 to cochrane.iag@gmail.com I have only received the standard automated reply.
  4. Trish

    The Complex Disorders Alliance (CODA) formerly The Metrodora Foundation

    More at link. https://precisionlife.com/news-and-events/precisionlife-and-metrodora-institute-share-first-insights-with-metx-study-participants Sounds interesting, even too good to be true?
  5. Trish

    Tell me more about nasal sprays as protection against the coronavirus

    I think you need to be careful with trying to make your own nasal sprays. Better to buy one recommended by a pharmacist perhaps. Another option is to wear a well fitting mask, open a window, and have the right sort of air filter running in the room.
  6. Trish

    Recover Long Covid workshop Sept 23-25

    See this thread: https://www.s4me.info/threads/usa-the-recover-initiative-long-covid-research.30525/page-10#post-548860 Agenda: https://web.cvent.com/event/11825c60-cdb2-446b-adcd-c1ea9e40368f/websitePage:52ef996b-aa85-48dd-860a-f4df948e7200?rt=Z9opfogxn0eAYYkLK-tbCg
  7. Trish

    United Kingdom: News from #There for ME

    I think the point of specialist nurses is they work in conjunction with a specialist doctor, not in isolation. This is what happens with MS and Parkinsons Disease.
  8. Trish

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

    I've just been listening to a BBC podcast on the Covid Inquiry where a senior nurse was in tears describing having to have critical care nurses trying to care for 6 patients and nurses who were not critical care trained having to try to help, where they should have had trained critical care...
  9. Trish

    The UK Covid Inquiry - 2023 onward

    copied from UK news I've just been listening to a BBC podcast on the Covid Inquiry where a senior nurse was in tears describing having to have critical care nurses trying to care for 6 patients and nurses who were not critical care trained having to try to help, where they should have had...
  10. Trish

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

    Lots of the things they are attributing to lockdown are unlikely to be related, for example, kids starting school now (aged 4 to 5) not being toilet trained. But they were babies during lockdowns, so wouldn't have been ready to be toilet trianed back then. Much more likely is the UK government...
  11. Trish

    What medical specialty should look after ME/CFS?

    My daughter was diagnosed by a rheumatologist and the same man did a good report that got me ill health retirement. He clearly believed ME was a physical disease. That was back in about 1998 and 2004, and he was quite elderly then, so his attitude had not been polluted by the 2007 NICE...
  12. Trish

    ME Hypothesis- Noradrenergic Neuron Dysfunction

    Moderator note While this hypothesis is interesting, it is as yet unproven, and the subtypes described are hypotheses, not a proven protocol for self diagnosis and treatment. Please be aware of this rule, and do not ask for, or offer, diagnosis of which hypothesised subtype you may belong to...
  13. Trish

    What medical specialty should look after ME/CFS?

    I think there's no better option than rheumatologists as things are at present. Neurologists will put us in FND and prescribe rehab, Rehab departments will prescribe rehab, psychiatrists will put us in psychosomatic and prescribe CBT... and so it goes.
  14. Trish

    United Kingdom: News from #There for ME

    Hi Karen, Welcome and I'm sorry you haven't been able to post yet. I've alerted the doorkeeping/mod team to see if we can sort out the problem. Thank you very much for responding fully and openly to concerns expressed on this thread. I am so far very impressed by the efforts of your small team...
  15. Trish

    Acupuncture and other traditional Chinese medicine news and discussion thread

    That's a really good comprehensive report, @Hutan. I hope the people you submitted it to take notice.
  16. Trish

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    Does it say what people should do if they are on ESA and don't receive a letter by the end of September?
  17. Trish

    News from Scandinavia

    I don't respond well to people who claim a cure but you have to buy the book to find out what it is.
  18. Trish

    What message on ME/CFS would you want to tell the public?

    I want to tell people I have a long term chronic illness that makes me feel ill all the time and limits my ability to do things, and that it's a very strange illness that the more you do any sort of exercise, including ordinary things like walking, the sicker you get, so any sort of attempts at...
  19. Trish

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

    Also posted and discussed here: #ThereForME campaign / Building an NHS that’s there for Long Covid and ME
  20. Trish

    United Kingdom: News from #There for ME

    I assume Dr Kane knows some of them, and the people who run the #ThereForMe campaign are in contact with others through Long Covid support groups. There may also be support groups of NHS workers with Long Covid and ME/CFS.
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