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  1. Esther12

    Will The UK Establishment Finally Stop Denying The Reality Of ME? Huff Post

    I keep reading about how important FB is for spreading news stories, but I spend very little time on there. Maybe we should think a bit about how to use FB more effectively for campaigning, or spreading awareness of S4ME? If Putin can do it, so can we!
  2. Esther12

    The Most Popular Terms for Medically Unexplained Symptoms: The Views of CFS Patients, 2015, Picariello et al

    Okay... I should avoid commenting on my half-memories of a paper. This paper has still been cited in annoying ways in presentations though! (I should really go back and check I've got that right actually).
  3. Esther12

    UK ME/CFS Biobank hosting Unrest screening with livestreamed Q&A after, Thurs 2nd Nov

    Okay, it's no longer live (have they got spies here?!) but if you go back to the start, there's quite a long recording of someone laying out the table. It's nearly as good as the biscuit talk.
  4. Esther12

    UK ME/CFS Biobank hosting Unrest screening with livestreamed Q&A after, Thurs 2nd Nov

    It's still live! We can hear them discussing their biscuits... gossip, gossip, gossip.
  5. Esther12

    Will The UK Establishment Finally Stop Denying The Reality Of ME? Huff Post

    I used to be really pleased about how bad the SMC was (what a great story it will make)... but they keep not falling! It has been so many long, long years.
  6. Esther12

    Will The UK Establishment Finally Stop Denying The Reality Of ME? Huff Post

    Actually, I just searched again and got different posts turn up. I don't think I understand facebook well enough to say what sort of response there is.
  7. Esther12

    UK ME/CFS Biobank hosting Unrest screening with livestreamed Q&A after, Thurs 2nd Nov

    I was too slow. Looks like it will be available to rewatch soon:
  8. Esther12

    Will The UK Establishment Finally Stop Denying The Reality Of ME? Huff Post

    I just searched for this piece on facebook to see what sort of response it was getting (not much so far) and saw Duffy saying "I've never had so much trouble getting my Huffington Post published." Seems we've got a lot against us.
  9. Esther12

    The Most Popular Terms for Medically Unexplained Symptoms: The Views of CFS Patients, 2015, Picariello et al

    I'd forgotten that they made that point. Since its release, there's been an attempt to present this paper as evidence that patients with CFS do support the use of the umbrella term 'Persistent Physical Symptoms'. I remember thinking when I read it that this study seemed designed to try to claim...
  10. Esther12

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    Thanks John. Really the article itself already made it clear that the 'balls' threat came from a purported call to Wessely. It's possible that the artist who created this used that purported quote, and then co-incidentally Crawley get sent an e-mail using the same quote... but that's getting a...
  11. Esther12

    Will The UK Establishment Finally Stop Denying The Reality Of ME? Huff Post

    Thanks. Great to see more attention being brought to this stuff. There's a lot of stuff packed in that Huffington piece. PACE, the Science Media Centre, insurance COIs, the DWP... in a five minute read. Some of it was a little loose, and could be seen as being unfair on PACE,but it can be hard...
  12. Esther12

    Documents from the SMILE trial

    What has been provided doesn't really clarify much the way the feasibility study became the full study, it was supposedly assessing the feasibility of, along with a change in primary outcome. Doesn't it look like the only funding they got was for the feasibility study?
  13. Esther12

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    I understand wanting access to primary sources. John seems like the sensible person to ask. We all have slightly different standards for evidence, and what claims can be cited. I'd assume John would be fine with people asking around too.
  14. Esther12

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    I've just seen that @JohnTheJack has posted here, so might be able to reassure you on what he was told. Thanks to John for looking into this.
  15. Esther12

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    I don't see how to watch the video on the TEDx site. It seems like the presentation after Crawley's is available, but I can't see hers. Any tips?
  16. Esther12

    Petition for increased research funding in the UK

    tbh, I'm wary of signing anything which could lead to more funding for Crawley. This is such a ridiculous situation... I should be able to sign that petition, but I just don't trust the UK medical research Establishment at all.
  17. Esther12

    You and Yours radio prog describes how ME patients are denied benefits

    Was there anything related to PACE/White type stuff in there? I've already got a back-log of things to listen to.
  18. Esther12

    HRA registered CFS studiesthat could be of interest

    If they're going to assess the safety of a treatment, having information on compliance would be a useful part of that. If a 'GET' programme doesn't lead to patients increasing their activity levels then this programme being found to be safe should not lead to patients being reassured that it is...
  19. Esther12

    HRA registered CFS studiesthat could be of interest

    I ended up looking at the twitter feed of Rickards, and he seems like exactly the sort of Wessely fan you'd expect: https://twitter.com/hughrickards/with_replies I wonder what result he'll want from his study? http://www.hra.nhs.uk/news/research...ss-in-patients-with-chronic-fatigue-syndrome/
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