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  1. TiredSam

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Nice to see them expressing enormous gratitude to those who reviewed the toolkit. Now that we've reviewed it I wonder if they'll be expressing the same enormous gratitude towards us? Unless "reviewing" in the AfME world just means nodding and saying "yes, that's great".
  2. TiredSam

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    Well here's my take on VES's second blog. It basicially consists of: 1. A friend told me that the PCC (which no longer exists) told him that ME patients were a nightmare. That it? As a lawyer (who can't seem to stop herself from waving her credentials in our face at every opportunity), surely...
  3. TiredSam

    Closed Forward ME Group CBT/GET Survey - Tell NICE your experiences

    Congratulations! You have just won this Sunday's Hedging Prize by qualifying the phrase "Peter Barry is listening" five times in one sentence.
  4. TiredSam

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Aye :emoji_hand_splayed:. Fabulous letter. With regards to evidence, from their statement here: https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/ So they claim that the therapies they recommend are evidence-based, but their only evidence seems to be "BACME...
  5. TiredSam

    The Grievance Studies

    Well I have now blasphemed openly so the atmosphere is decidedly frosty. I was half expecting to be purged, but they've just booked me again for the next semester. Must be less trouble than getting rid of me I suppose.
  6. TiredSam

    Action for M.E. Walk with M.E. 2019

    Looks like our positive couple gets around a bit: https://www.ignatianspirituality.com/24807/why-gratitude https://www.penderelstrust.org.uk/adviceEmployer.php Still, no need to use a picture of a real M.E. sufferer, it's not as if AfME actually know any.
  7. TiredSam

    Action for M.E. Walk with M.E. 2019

    I think it's marvellous, I feel encouraged and supported to leave my sofa and show the world that with the right help and support I really can go for a long walk. Thank you AfME. Apparently this is one of a series of events, here's the next one: This event fits in with AfME's current position...
  8. TiredSam

    How I Survived My Battle With Unsolicited Advice

    I think I might have the same problem.
  9. TiredSam

    CFS (PVFS, neurasthenia, ME), (2010 updated 2018) by M Sharpe, chapter in Oxford Textbook of Medicine

    perpetuating factors—for practical management the most important factors are those that perpetuate the illness and consequently act as barriers to recovery, including the unmodifiable behaviour of Michael Sharpe and colleagues.
  10. TiredSam

    Katie Boulter exclusive interview: 'I got to the point where I was pretty much doing nothing during the day'

    And another pic for the "typical ME sufferers in the media" album.
  11. TiredSam

    The Grievance Studies

    Here's a (rather long) interview of the authors of the hoax articles where they discuss the ethics of the hoax (apparently - haven't had time to watch it myself yet):
  12. TiredSam

    "This is M.E." booklet by Action for ME - Feedback survey

    Maybe they should practise what they preach and make a small accomodation to support PwME by changing the timeout setting.
  13. TiredSam

    A woman, 28, was left bed-ridden after her leaking breast implants made her hair fall out in clumps

    The pictures don't seem to fit the tone or subject of the article very well. 5 photographs (selfies - all labelled photo - Emma Owen) of her looking glamorous? Sipping a cocktail, in front of an expensive car, made up with a dog, on a balcony in an exotic location ...
  14. TiredSam

    The Sugar Conspiracy (The Guardian) "scientific inquiry prone to the eternal rules of human social life"

    The press is full of the benefits of fibre and wholemeal bread this morning, for example: https://www.bbc.com/news/health-46827426
  15. TiredSam

    The Sugar Conspiracy (The Guardian) "scientific inquiry prone to the eternal rules of human social life"

    The story continues ... https://www.wired.com/story/how-a-dollar40-million-nutrition-science-crusade-fell-apart/
  16. TiredSam

    The Sugar Conspiracy (The Guardian) "scientific inquiry prone to the eternal rules of human social life"

    This bit about cholesterol and eggs made me laugh: This has a very familiar ring to it, as does much else in the article.
  17. TiredSam

    Action for M.E. hosts DWP spotlight training

    AfME were present on this thread where I posted on 31st August 2018: https://www.s4me.info/threads/action-for-me-the-pace-trial-and-behavioural-treatments-for-m-e-position-statement.5532/page-6#post-100457 And I've posted directly to AfME here on other threads on the same point previous to...
  18. TiredSam

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    Isn't that a charity run largely by women with a very good nose for PR? Valerie Eliot Smith should be careful what she wishes for.
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