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  1. Fainbrog

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Glad CS got a good chance to explain and was able to point out that he had provided advice to PG early on, which had been useful. Hope PG is seething at that being included, doesn't normally get that much of a look in to reports of his amazing journey of self healing. Now, Paul, let's head off...
  2. Fainbrog

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Every time I see this post alert my heart sinks a bit, wondering what he's said this time..
  3. Fainbrog

    United Kingdom: ME Association governance issues

    And, from some of what Dr CS posted on FB last night, he’s not learned anything from the last few months about why many were so upset by NR. Basically told one person if they didn’t like it, there were plenty of other charities out there. A number of people called him out on it and he has...
  4. Fainbrog

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Deflecting from the comments that Dr CS made on FB last night probably.
  5. Fainbrog

    United Kingdom: ME Association governance issues

    Agreed, 100%. It's a shame it has taken so long - it was clear late last year that his position was untenable and he has done untold damage by staying put and digging in. However, let's hope a more positive path can be forged by the next Chair with a more conciliatory approach to the ME...
  6. Fainbrog

    United Kingdom: ME Association governance issues

    My word, why is he being so difficult? You, and others here, have asked valid questions about this, yet, he's still trying to be smart? 'Why?'. Just answer the bl**dy questions man! So far, he and the board have still not fully explained the sequence of events to to satisfaction of those who...
  7. Fainbrog

    United Kingdom: ME Association governance issues

    Someone has posted some more positive feedback to the Chairman’s statement, albeit with a caution at the end (‘I know nothing of the controversy regarding the AGM or the Chairman. I am however unsettled by the negative comments. I'm hoping that this charity doesn't have an agenda in opposition...
  8. Fainbrog

    United Kingdom: ME Association news

    I'd love to think this is a sign of rebellion in the ranks by their poor social media team :laugh:
  9. Fainbrog

    United Kingdom: ME Association news

    Interestingly, Mr. Barton's comment seems to have disappeared entirely now. There were 26 comments, a number of which are hidden, but it dropped to 25 and however you slice and dice it on the FB filters, his isn't there any more.
  10. Fainbrog

    United Kingdom: ME Association governance issues

    And someone has just posted that they will not be raising any funds for them from now on. Assume that will be swiftly hidden when they next come to clear things down.
  11. Fainbrog

    United Kingdom: ME Association governance issues

    But, more comments are appearing and calling out the hiding of the previous posts. Am screen grabbing when I remember to.
  12. Fainbrog

    United Kingdom: ME Association governance issues

    So, I guess this statement will be what they refer everyone to now alongside the FAQ. I had hoped the apparent radio silence to the various queries raised from members here was them having a considered pause as a board, but, with a cursory glance, is looking like they are digging in or kicking...
  13. Fainbrog

    United Kingdom: ME Association news

    The ME Association Chairman’s Statement for 2024 has been shared; https://meassociation.org.uk/2025/01/the-me-association-chairmans-statement-for-2024/?utm_source=rss&utm_medium=rss&utm_campaign=the-me-association-chairmans-statement-for-2024 Copied and discussed here...
  14. Fainbrog

    United Kingdom: ME Association governance issues

    Copied post The ME Association Chairman’s Statement for 2024 has been shared; https://meassociation.org.uk/2025/01/the-me-association-chairmans-statement-for-2024/?utm_source=rss&utm_medium=rss&utm_campaign=the-me-association-chairmans-statement-for-2024
  15. Fainbrog

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

    I guess when we look at other threads about the charities, there's a why on earth would I join them? Especially, the MEA, whose seeming USP is a quarterly magazine and some Facebook posts. We are being let down by both the main charities in terms of reasons to actually join them - but it's...
  16. Fainbrog

    United Kingdom: ME Association governance issues

    The best they can say of the benefits that members get is a quarterly magazine..really selling it chaps.
  17. Fainbrog

    United Kingdom: ME Association governance issues

    Thanks for this. Is the minimum they need to do right now to have a shred of credibility. Then the board needs to explain how they got into this mess and summarily eject Mr Riley from his role (not necessarily in that order). None of which will I be holding my breath for.
  18. Fainbrog

    United Kingdom: ME Association governance issues

    It's interesting that the default position of CH, what's registered with them is what is current and the MEA need to take advice on changing it. I guess that's how they interpret the law. Riley may have a harder time just saying 'soz, we sent the wrong thing, lols..Neil' than maybe he hopes he...
  19. Fainbrog

    United Kingdom: ME Association governance issues

    Great email, Suzy, thanks. Hoping they start to see the mess they have created when a number of observers (ie. you and @Peter Trewhitt that we know of) are clearly explaining why you continue to seek answers to questions they feel they have answered. It still annoys me immensely that ill...
  20. Fainbrog

    United Kingdom: ME Association governance issues

    It's beyond farce now. He's tying himself in knots over what he's saying to one and to another. Agree, they just need to front it and say 'here's the documents, read it and weep, I was right all along' and it will all go away. ETA: well, it might not entirely go away because it will spawn a...
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