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  1. Sasha
    Post

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

    Thanks, everyone! Some fascinating and insightful posts straight out of the gate, and I'm amazed I didn't know how bad the diagnosis issue was....
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
  2. Sasha
    Post

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

    Just bagging this post in case I want to do a thread summary later...
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
  3. Sasha
    Post

    United Kingdom: ME Association governance issues

    Here's why I was asking about membership! :)
    Post by: Sasha, Jan 7, 2025 in forum: Organisations relevant to ME/CFS and Long Covid
  4. Sasha
    Thread

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

    There are an estimated 250,000 PwME in the UK, not counting the influx from Covid, and yet only about 20,000 joined DecodeME (a low-effort,...
    Thread by: Sasha, Jan 7, 2025, 226 replies, in forum: Fundraising
  5. Sasha
    Post

    United Kingdom: ME Association governance issues

    Thanks, @Peter Trewhitt and @Nightsong! I had a look at AfME's latest annual report and couldn't find how many members/subscribers/supporters...
    Post by: Sasha, Jan 7, 2025 in forum: Organisations relevant to ME/CFS and Long Covid
  6. Sasha
    Post

    United Kingdom: ME Association governance issues

    I was surprised not to be able to find this info on the Charity Commission website when I looked just now.
    Post by: Sasha, Jan 7, 2025 in forum: Organisations relevant to ME/CFS and Long Covid
  7. Sasha
    Post

    United Kingdom: ME Association governance issues

    Can someone remind me how many members the MEA has, please? I know it's been mentioned upstream but I can't find it. Do we know how many members...
    Post by: Sasha, Jan 7, 2025 in forum: Organisations relevant to ME/CFS and Long Covid
  8. Sasha
    Post

    UK NHS: Government proposed changes from July 2024

    But how would we know if we needed one?
    Post by: Sasha, Jan 6, 2025 in forum: Other health news and research
  9. Sasha
    Post

    A new support pack for anyone with ME/CFS going to hospital (MEA)

    Thanks, @obeat - that looks like an excellent list. I'm sorry it took you 10 months to recover from a previous surgery and hope this list helped...
    Post by: Sasha, Jan 6, 2025 in forum: Resources
  10. Sasha
    Post

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

    BTW, when I said I was holding my horses, I didn't mean that everyone else had to! Please do comment on priorities, process etc., especially if...
    Post by: Sasha, Jan 6, 2025 in forum: General ME/CFS discussion
  11. Sasha
    Post

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

    Thanks, @Trish, that's entirely reasonable! I'll link upstream to your post. Also entirely reasonable. I will hold my horses! :)
    Post by: Sasha, Jan 6, 2025 in forum: General ME/CFS discussion
  12. Sasha
    Post

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

    That seems to be the consensus (as I said in my post to @Ash above, I didn't represent that consensus accurately in my summary!). I think we need...
    Post by: Sasha, Jan 5, 2025 in forum: General ME/CFS discussion
  13. Sasha
    Post

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

    Thanks for making me look at this again! I've presented this as an option but looking now at how many 'Likes' Trish's post on this and how many...
    Post by: Sasha, Jan 5, 2025 in forum: General ME/CFS discussion
  14. Sasha
    Post

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

    Thank you, @Jonathan Edwards, much appreciated!
    Post by: Sasha, Jan 5, 2025 in forum: General ME/CFS discussion
  15. Sasha
    Post

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

    Prospective lead-writers! Would you like to give us a sense of your background that would make you a good fit for the role? (I will edit this into...
    Post by: Sasha, Jan 5, 2025 in forum: General ME/CFS discussion
  16. Sasha
    Post

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

    So sorry, @JemPD! We've all been there (and a lot of us are there right now). But I think this project will still be going by May and that...
    Post by: Sasha, Jan 5, 2025 in forum: General ME/CFS discussion
  17. Sasha
    Post

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

    Thanks for the great discussion so far, everybody! We've only been discussing this since yesterday morning but we've had lots of great...
    Post by: Sasha, Jan 5, 2025 in forum: General ME/CFS discussion
  18. Sasha
    Post

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

    Would it be better to pause the detailed discussion of PEM and other content until we start the relevant documents? This is the sort of input that...
    Post by: Sasha, Jan 5, 2025 in forum: General ME/CFS discussion
  19. Sasha
    Post

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

    I can see the value of pulling in wider thoughts from the forum ahead of drafting but if we're doing these documents sequentially (which might be...
    Post by: Sasha, Jan 5, 2025 in forum: General ME/CFS discussion
  20. Sasha
    Post

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

    I'm all in favour of this list! People may vary on what order the priorities should go but I don't think it matters because I think we'll be...
    Post by: Sasha, Jan 5, 2025 in forum: General ME/CFS discussion
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