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  1. Sasha
    Post

    What do we mean by a diagnosis like ME/CFS?

    I'm still processing this but I raised the issue of how diagnosis works on another thread where we had got into a discussion about PEM. In your...
    Post by: Sasha, Jan 13, 2025 in forum: Diagnostic Criteria and Naming Discussions
  2. Sasha
    Post

    Donating and fundraising by people with ME/CFS - discussion thread

    Merged thread In this Twitter post, Robert, a PwME, says, 'I have severe ME/CFS and have raised over £20,000 since 2013, mostly via...
    Post by: Sasha, Jan 13, 2025 in forum: Fundraising
  3. Sasha
    Post

    What do we mean by a diagnosis like ME/CFS?

    Thank you, @Jonathan Edwards! That's fascinating. I've just read it and am going to reread it to try to really get my head around it. What about...
    Post by: Sasha, Jan 13, 2025 in forum: Diagnostic Criteria and Naming Discussions
  4. Sasha
    Post

    What high-quality resources should S4ME produce for PwME, clinicians, researchers etc.?

    @Jonathan Edwards, I have the feeling in this discussion of PEM (which I must admit I still don't understand) that you as a clinician are...
    Post by: Sasha, Jan 12, 2025 in forum: General ME/CFS discussion
  5. Sasha
    Post

    Where can patients argue with clinicians and scientists about bad science in ME/CFS?

    This lack of critical thinking, and unwillingness to face critical thinking, is horrific. I wonder if it's more common in medicine because of its...
    Post by: Sasha, Jan 12, 2025 in forum: General ME/CFS discussion
  6. Sasha
    Post

    Where can patients argue with clinicians and scientists about bad science in ME/CFS?

    I'm frankly disappointed that there seems to be no patients' organisation that consists of appalled patients calling for better standards in...
    Post by: Sasha, Jan 12, 2025 in forum: General ME/CFS discussion
  7. Sasha
    Post

    Where can patients argue with clinicians and scientists about bad science in ME/CFS?

    Interesting! I wonder whether a PwME could get onto the ME committee? Not sure how the committees are arranged.
    Post by: Sasha, Jan 12, 2025 in forum: General ME/CFS discussion
  8. Sasha
    Post

    Where can patients argue with clinicians and scientists about bad science in ME/CFS?

    But this is precisely what happens at conferences! People present their papers, they get questions, including critical ones from the floor, and...
    Post by: Sasha, Jan 12, 2025 in forum: General ME/CFS discussion
  9. Sasha
    Post

    Where can patients argue with clinicians and scientists about bad science in ME/CFS?

    If I were doing medical research and there was a patient forum discussing my paper, I'd love to know. Sealioning is something else entirely - it's...
    Post by: Sasha, Jan 12, 2025 in forum: General ME/CFS discussion
  10. Sasha
    Post

    Where can patients argue with clinicians and scientists about bad science in ME/CFS?

    This is cheering! What do you think of the idea of emailing researchers to let them know that their papers have been posted on the forum for...
    Post by: Sasha, Jan 12, 2025 in forum: General ME/CFS discussion
  11. Sasha
    Post

    Where can patients argue with clinicians and scientists about bad science in ME/CFS?

    I wonder if it would make sense to have a standard email that goes out to the authors every time we start a new thread on a particular research...
    Post by: Sasha, Jan 12, 2025 in forum: General ME/CFS discussion
  12. Sasha
    Post

    Where can patients argue with clinicians and scientists about bad science in ME/CFS?

    I always worry that we are just talking to ourselves here. In what way do you see us as having a big impact? To whom is the word spreading? It's...
    Post by: Sasha, Jan 12, 2025 in forum: General ME/CFS discussion
  13. Sasha
    Post

    What high-quality resources should S4ME produce for PwME, clinicians, researchers etc.?

    Because isn't this worsening of symptoms following exertion the key symptom that distinguishes ME/CFS from other things? If we don't have PEM,...
    Post by: Sasha, Jan 12, 2025 in forum: General ME/CFS discussion
  14. Sasha
    Post

    What high-quality resources should S4ME produce for PwME, clinicians, researchers etc.?

    Doesn't the unpredictability issue simply mean that our condition varies spontaneously in severity but that we can also make it worse by...
    Post by: Sasha, Jan 12, 2025 in forum: General ME/CFS discussion
  15. Sasha
    Thread

    Where can patients argue with clinicians and scientists about bad science in ME/CFS?

    It drives me nuts that our big funding bodies are still funding open-label, subjective-measures BPS studies and that medical journals are still...
    Thread by: Sasha, Jan 12, 2025, 62 replies, in forum: General ME/CFS discussion
  16. Sasha
    Post

    What high-quality resources should S4ME produce for PwME, clinicians, researchers etc.?

    I agree that no one seems to know what 'malaise' means but I think 'crash' implies something severe and sudden, and PEM may be neither. You don't...
    Post by: Sasha, Jan 12, 2025 in forum: General ME/CFS discussion
  17. Sasha
    Post

    Has anyone else here struggled with a persistent verruca?

    I followed the advice of Dr Michael Greger (of NutritionFacts.org fame), who looked at RCTs on removing warts with duct tape, and managed to...
    Post by: Sasha, Jan 11, 2025 in forum: Other specific illnesses
  18. Sasha
    Post

    Donating and fundraising by people with ME/CFS - discussion thread

    Do you have any examples of what they've done?
    Post by: Sasha, Jan 10, 2025 in forum: Fundraising
  19. Sasha
    Post

    Donating and fundraising by people with ME/CFS - discussion thread

    That's fair enough, @NelliePledge! We're all short on bandwidth. Does anyone know what's going on in Germany and Austria that would be helpful to...
    Post by: Sasha, Jan 10, 2025 in forum: Fundraising
  20. Sasha
    Post

    Donating and fundraising by people with ME/CFS - discussion thread

    This is another hopeful example in addition to @EndME's because of how impoverished and debilitated PwME are, which I think is likely to be a huge...
    Post by: Sasha, Jan 10, 2025 in forum: Fundraising
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