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  1. Trish

    Drawing the lines of fibromyalgia: a mixed-methods approach to mapping body image, body schema, and emotions in patient subtypes, 2024, Swidrak

    The people judging the drawings were psychologists or doctors who are experts in pain and didn't know the participants. Is this an art competition or a scientific study? Participants are asked to draw freely, yet their drawings are being interpreted as revealing psycholical flaws. Surely...
  2. Trish

    United Kingdom: ME Association governance issues

    So Riley gets to make a statement on the MEA website that isn't a real apology, it's a string of excuses and self justifcation. So he sets up the straw man argument that he wasn't advocating GET, as far as I know no one has accused him of doing so. Then he goes on to compound the problem by...
  3. Trish

    United Kingdom: ME Association governance issues

    I've just had a quick look at the MEA trustee, staff and volunteer list. I didn't realise they employ so many people. I see Russell Fleming has worked his way up from part time volunteer through various roles to now Head of Project Development, a full time very responsible position...
  4. Trish

    United Kingdom: ME Association governance issues

    I'd vote for closing it down and transferring the materials written by Charles Shepherd to AfME or archving them in accessible form once Charles retires. Research funds could be transferred to MERUK and funds given for running costs to AfME.
  5. Trish

    United Kingdom: ME Association governance issues

    https://www.s4me.info/threads/open-letters-to-the-uk-me-association-trustees-about-a-research-project-developing-proms-led-by-sarah-tyson.37937/#post-524843 The only response by Neil Riley to our complaint about Tyson's behaviour was that the complaint was 'noted', and that the MEA have full...
  6. Trish

    United Kingdom: ME Association governance issues

    Well done #ThereForME. It would be interesting to know what the response they got from the MEA said, and who wrote it.
  7. Trish

    United Kingdom: ME Association news

    Can you give a link to the FB post so we can see the context, please?
  8. Trish

    United Kingdom: Action for ME (AfME) news

    I haven't followed what sort of interactions on Twitter they say have been spreading misinformation about them and creating a lot of work, so I can't comment on that. Surely those people if they want to continue to be vocally critical of AfME will simply follow AfME to Bluesky or TikTok anyway...
  9. Trish

    United Kingdom: ME Association governance issues

    Oh dear, Neil Riley, that is the most tone deaf, idiotic, patronising, scientifically ignorant article. How could the MEA have gone so far astray? Like many others I paid my subs to the MEA for years. No more.
  10. Trish

    Impacts of the 2024 change in US government on ME/CFS and Long Covid

    Ah, OK so not AI generated this time. There are so many faked pictures all over social media it's hard to tell.
  11. Trish

    Impacts of the 2024 change in US government on ME/CFS and Long Covid

    I suspect that image is AI generated.
  12. Trish

    Perrin Technique

    Ah, OK, well done for trying.
  13. Trish

    Feeling insecure about romantic relationships

    That's wonderful, @Hoopoe.
  14. Trish

    United Kingdom: ME Association governance issues

    Given that I think Charles Shepherd is doing an exceptionally good job producing good materials and doing media interviews etc, I'm glad he's stayed on. I have seen no evidence of anyone else at the MEA doing anything useful.
  15. Trish

    Perrin Technique

    In that case I'd just point out for the sake of other readers that there's no evidence, and leave it at that. There's no way to persuade fanatical fans of alt med.
  16. Trish

    Perrin Technique

    I think I would respond by asking them to provide links to clinical trial evidence of efficacy.
  17. Trish

    Perrin Technique

    As far as I know Perrin hasn't done any clinical trial of his method. His PhD research was laughably bad. For me that's enough to doubt everything he says. It's all self promotion, not science.
  18. Trish

    An Adaptive Pacing Intervention for Adults Living With Long COVID: A Narrative Study of Patient Experiences of Using the PaceMe app 2024 Meach et al

    I found heart rate monitoring helpful, but I agree it's something that should be used as a tool for helping to learn to listen to the body, and how we use it should be flexible and down to the individual, not regimented. Turning it into a more regimented control app with good behaviour...
  19. Trish

    Perrin Technique

    I got that, my point was Perrin seems to be claiming its a popular treatment when that figure was probably based on a percentage of a tiny number who had tried his technique, and in it came out worse than pacing or resting which aren't treatments. It's all nonsense.
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