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  1. TiredSam

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    In the interests of diplomacy and collaboration I will make a herculean effort to restrain myself from saying "Don't be silly", hopefully thereby setting a splendid example to others of the kind of language that is appropriate on a forum of very ill people using their precious time and energy to...
  2. TiredSam

    UK: Open Letter: Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.)

    Be careful what you wish for. Demanding anything of health services for ME has gone horribly wrong so often.
  3. TiredSam

    Blood–brain barrier disruption and sustained systemic inflammation in individuals with long COVID-associated cognitive impairment, 2024, Greene et al

    Sky news: https://news.sky.com/story/cause-of-long-covid-brain-fog-could-be-from-leaky-blood-vessels-study-says-13078199
  4. TiredSam

    Long Covid drug BC-007 research news

    Tagesspiegel, 2024-02-09: Long-awaited active ingredient against Long Covid: Participants wanted for study with BC 007 (Interview with CEO of Berlin Cures, Oliver von Stein) Paywalled.
  5. TiredSam

    Do you have a UK NICE care plan?

    I read that as "overseas" and had to re-read it a few times to work out what on earth you were talking about. My best guess at first was that the community nurse was telling you that you might as well get someone abroad to deal with your chronic fatigue. I actually do have an overseas health...
  6. TiredSam

    Clare Gerada: influence on UK medical practice and ME/CFS management

    At last they have found their true calling.
  7. TiredSam

    Well-known, famous people with Covid-19 and Long Covid

    Lean on the counter, definitely. In the early days of ME I carried on having a couple of friends round to play darts in my cellar. I quickly learnt that sitting down and standing up again between turns exhausted me, leaning against the wall in the corner between turns was definitely the lesser...
  8. TiredSam

    Whitney Dafoe Updates

    After seeing how the likes of Wessely and Crawley have constructed narratives of attacks and harrassment I'm very reluctant to take such claims at face value from anyone if no specific evidence is produced. Having ME doesn't give you the right not to be disagreed with, or to label people who...
  9. TiredSam

    What can we learn from the Post Office scandal publicity (including TV)?

    I haven't watched the series yet, but I read an article which said that the programme makers have since been inundated with requests from people saying "You think the Post Office scandal was bad, let me tell you about this ... ". We would be at the back of a very long queue. One thing I often...
  10. TiredSam

    News from Germany

    There is also an easier to listen version for ME sufferers. I've listened to the first 30 minutes, it seems like an excellent review of ME history and politics. David Tuller and Carmen Scheibenbogen are in it, as is an evil psych for balance. The piece starts with a long covid sufferer who...
  11. TiredSam

    Earseeds, Acuseeds

    Anyone else spot the irony of the closing credit?
  12. TiredSam

    Earseeds, Acuseeds

    The episode is back up on the iPlayer, with the following message: Haven't watched the edited version.
  13. TiredSam

    A Girl Behind Dark Glasses - Jessica Taylor-Bearman

    I've read the first two and just ordered this one.
  14. TiredSam

    Opinion How methodological pitfalls have created widespread misunderstanding about long COVID, 2023, Høeg, Ladhani, Prasad

    Saw this on my Sky News app and smelt a rat immediately ... https://news.sky.com/story/long-covid-risks-are-distorted-by-flawed-research-study-finds-12969777 Although there is a little balance at the end
  15. TiredSam

    ME/CFS and Long Covid charities/ organisations - International and National

    In Germany, there are also: - Fatigatio e.V. https://www.fatigatio.de/ - Lost Voices Foundation https://lost-voices-stiftung.org/ - Diverse Long Covid Organizations -- the largest I think is: Long Covid Deutschland https://longcoviddeutschland.org/
  16. TiredSam

    Psychomotor Vigilance Test - discussion and testing

    I don't know why they think it's an appropriate thing to have on a sleep disorders website, people like me will be up all night trying to beat their high score.
  17. TiredSam

    Psychomotor Vigilance Test - discussion and testing

    I took the test last night around midnight, I'm a night owl. I was tired, but not ME tired. Thought I'd compare with midday, and managed a little better, but I think that's just because of practise, dogged determination and testosterone fuelled ambition: Results: Test Duration= 124 seconds...
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