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  1. Sasha
    Post

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

    I wanted this discussion to be specific to a single country because I think that the percentage of PwME in each country contributing to...
    Post by: Sasha, Jan 9, 2025 in forum: Fundraising
  2. Sasha
    Post

    United Kingdom: ME Association news

    Totally agree, hugely important, and an ongoing weird absence of activism on the part of the MEA.
    Post by: Sasha, Jan 9, 2025 in forum: News from organisations
  3. Sasha
    Post

    United Kingdom: ME Association news

    What does this mean in practice, regarding the issues that have been discussed on this thread and the efforts of people here to understand them...
    Post by: Sasha, Jan 9, 2025 in forum: News from organisations
  4. Sasha
    Post

    Pacing up - why it's as harmful and unevidenced as GET

    I made myself permanently worse by travelling from my parents' home some distance away by train and then finding that the clinic would have let me...
    Post by: Sasha, Jan 8, 2025 in forum: General ME/CFS discussion
  5. Sasha
    Post

    Pacing up - why it's as harmful and unevidenced as GET

    You make an excellent point there! And the sheer size of a hospital makes it very hard to a PwME to get around it.
    Post by: Sasha, Jan 8, 2025 in forum: General ME/CFS discussion
  6. Sasha
    Post

    Pacing up - why it's as harmful and unevidenced as GET

    Do we have any numbers on how many of the specialist clinics are using this 'pacing up' approach (for example, from their literature)? Have any...
    Post by: Sasha, Jan 8, 2025 in forum: General ME/CFS discussion
  7. Sasha
    Post

    Pacing up - why it's as harmful and unevidenced as GET

    I thought this was great, @Trish! And it came as a helpful clarification of things and as a reminder to myself not to push my activity (a thing...
    Post by: Sasha, Jan 8, 2025 in forum: General ME/CFS discussion
  8. Sasha
    Post

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

    That could be important. For PwME themselves, I wouldn't expect that to make any difference, and thus no difference in membership (given that I...
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
  9. Sasha
    Post

    United Kingdom: NHS Reasonable Adjustments Digital Flag

    I'm a bit confused - the two links in that tweet to YouTube are dead, and the NHS link goes here, where it's unclear to me whether the flag is...
    Post by: Sasha, Jan 7, 2025 in forum: General disability topics and advocacy
  10. Sasha
    Post

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

    But that's presumably the benefits that people might expect at least from the MEA and its research fund - better drugs (that is, some drugs at...
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
  11. Sasha
    Post

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

    What benefits do you see a PwParkinson's or a PwMS getting from their respective charities that ours don't provide?
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
  12. Sasha
    Post

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

    Any thoughts about a solution if they don't? I really hope they do, but...
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
  13. Sasha
    Post

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

    Do we have any good papers on the prevalence of ME (with PEM)? Especially in the UK? I'm horrified that more than 40 years since ME/CFS came to...
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
  14. Sasha
    Post

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

    Do we have an info or data on whether this is still happening? Certainly some years ago some top BPSers were associating being ill with belonging...
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
  15. Sasha
    Post

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

    @Andy, do you happen to have a copy of that update? It would be interesting to see it. Just had a quick online search but couldn't find a report...
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
  16. Sasha
    Post

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

    That's quite possible. I wonder if there's a similar situation for other diseases? When we're trying to get more money to fund research, we really...
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
  17. Sasha
    Post

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

    I was still an MEA member when DecodeME was recruiting and the MEA pushed hard and repeatedly in its magazine for PwME to sign up. IIRC, there was...
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
  18. Sasha
    Post

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

    I wonder whether the 'paradox of choice' is also playing a part in preventing PwME from being linked into the community, in that when you get your...
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
  19. Sasha
    Post

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

    That's a good question. But if that 250,000 prevalence figure is remotely accurate, the fact that only 20,000 PwME took part in DecodeME (which we...
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
  20. Sasha
    Post

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

    @Jonathan Edwards, do you have any thoughts on this, including why GPs might not be diagnosing patients and what the solution might be? Do you...
    Post by: Sasha, Jan 7, 2025 in forum: Fundraising
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