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  1. Sasha
    Post

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

    Just managed to find its very jaunty YouTube promo video (very lively music, sound off if you're sensitive!). The weblink to the blog is dead, but...
    Post by: Sasha, Jan 15, 2025 in forum: Fundraising
  2. Sasha
    Post

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

    I think you have your priorities right, @Kitty! Extremely ill PwME who are living under such extreme circumstances with very little money...
    Post by: Sasha, Jan 15, 2025 in forum: Fundraising
  3. Sasha
    Post

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    What sort of work does AfME do in this context?
    Post by: Sasha, Jan 15, 2025 in forum: ME/CFS research news
  4. Sasha
    Post

    Review Machine learning and multi-omics in precision medicine for ME/CFS, 2025, Huang....Armstrong

    Is he on the forum? Can we just ask him?
    Post by: Sasha, Jan 15, 2025 in forum: ME/CFS research
  5. Sasha
    Post

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

    That's an interesting thought, but I posted the quote not because of that aspect (which I hadn't thought about as deeply as you but had assumed...
    Post by: Sasha, Jan 15, 2025 in forum: Fundraising
  6. Sasha
    Post

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

    I think you're right! Providing an enjoyable thing to do is a good way to get healthy people to support us, and it doesn't even have to involve...
    Post by: Sasha, Jan 14, 2025 in forum: Fundraising
  7. Sasha
    Post

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

    The key issue for me is that, without biomedical research and the effective treatments that would result, PwME are stuck in hell. Poor funding has...
    Post by: Sasha, Jan 14, 2025 in forum: Fundraising
  8. Sasha
    Post

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

    We don't have data, AFAIK, on how many individuals donate but as per my first post on the thread, the money donated to our ME charities divided by...
    Post by: Sasha, Jan 14, 2025 in forum: Fundraising
  9. Sasha
    Post

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

    I think that spending on unproven treatments is logical and understandable, given that we don't know what does and doesn't work, especially for...
    Post by: Sasha, Jan 14, 2025 in forum: Fundraising
  10. Sasha
    Post

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

    I recently stumbled over what I thought was an absolutely stellar fundraising mechanism by an Berlin-based rewilding organisation called Planet...
    Post by: Sasha, Jan 14, 2025 in forum: Fundraising
  11. Sasha
    Post

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

    We've talked about why we don't fundraise, and although some of the issues are ME/CFS-specific, I don't think they all are. If I had Parkinson's...
    Post by: Sasha, Jan 14, 2025 in forum: Fundraising
  12. Sasha
    Post

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

    I just wanted to thank the people who have posted their personal reasons for not fundraising, some of which are painful reasons and not easy to...
    Post by: Sasha, Jan 14, 2025 in forum: Fundraising
  13. Sasha
    Post

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

    That's a very interesting possibility. I wonder what happens at the moment with ME/CFS support groups. ME/CFS is such an outlier in so many ways....
    Post by: Sasha, Jan 14, 2025 in forum: Fundraising
  14. Sasha
    Post

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

    Is that something that people here on the forum would be able to do, given the right instruction? (Because I'm thinking primarily about research...
    Post by: Sasha, Jan 13, 2025 in forum: Fundraising
  15. Sasha
    Post

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

    I really like that idea! And this insight!
    Post by: Sasha, Jan 13, 2025 in forum: Fundraising
  16. Sasha
    Post

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

    I really like your thoughts here, @Hutan, in your whole post! I wanted to pull this bit out. I think you make a really good point that a charity...
    Post by: Sasha, Jan 13, 2025 in forum: Fundraising
  17. Sasha
    Post

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

    I don't think anyone is suggesting that feeling ill that would affect the biochemistry. (Actually, I don't think anyone is necessarily suggesting...
    Post by: Sasha, Jan 13, 2025 in forum: Diagnostic Criteria and Naming Discussions
  18. Sasha
    Post

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

    Just tagging @PeterW, in case of interest...
    Post by: Sasha, Jan 13, 2025 in forum: Fundraising
  19. Sasha
    Post

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

    PEM, XIM and WAE sound identical. If the malaise is the subjective experience associated with a particular biochemical event that has been...
    Post by: Sasha, Jan 13, 2025 in forum: Diagnostic Criteria and Naming Discussions
  20. Sasha
    Post

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

    My experience has been mostly of chronic fatiguability rather than chronic fatigue - that is, I'm not tired all the time but can easily become...
    Post by: Sasha, Jan 13, 2025 in forum: Diagnostic Criteria and Naming Discussions
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