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  1. Esther12

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    If they apologise for the way they've behaved, then maybe that's a sign that they're not as despicable as they seem. I don't think that's likely while Fiona Fox is in charge.
  2. Esther12

    Systematic review of randomized controlled trials for (CFS/ME) - Do-Young Kim et al Jan 2020

    I've not read this paper yet, but a careful systematic review pointing out all the problems with the research in this area would be valuable. Systematic reviews have real political power and leaving them to just those trying to promote CBT/GET would do real harm.
  3. Esther12

    Social Stigma Towards People with Medically Unexplained Symptoms: the Somatic Symptom Disorder, 2020, Aydogmus

    Thanks Andy. I've not read the paper yet, but wanted to see how they described people with 'MUS' to students. This is the vignette they used: I'm not sure that any anti-stigma campaign is likely to lead to students embracing those with 'MUS'/'SSD' when they are being portrayed like that.
  4. Esther12

    "ME/CFS Funding Worsens As NIH Maintains Status Quo"

    Could this partly be a sign of success? We've helped make it clear that CFS is a condition surrounded by poor quality research where poor quality research is no longer seen as acceptable. In the long--run, that's a good thing, but it's not something that is going to encourage an immediate glut...
  5. Esther12

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I don't think that's a fact - especially if he's saying things that don't conform to the SMC's narrative. If the SMC are involved in setting up press promotion then the prejudices of those at the SMC is likely to shape how reporters view it. eg: Did this briefing from Lipkin lead to any...
  6. Esther12

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    IMO the only thing to be done at the SMC is to point out the appalling role they have played in promoting prejudice and misinformation. They are so bad that anything good they do is likely to cause net harm by allowing them to point to that as an indication of how 'balanced' they are.
  7. Esther12

    #MEAction Scotland News

    I wonder who wrote that - who can be challenged? Whoever wrote and/or approved that submission clearly should not hold a position with any authority over patients.
  8. Esther12

    FOI request re PACE Cost-Effectiveness Analysis

    Is there anyway of us seeing what data is available? eg: is the LTFU employment data included? I couldn't see how to find that out, but surely you must be able to find out what's available before starting to devise a proposal?
  9. Esther12

    Statnews - BMJ should retract flawed research paper on chronic fatigue syndrome -STAT - David Tuller Dec 2019

    I thought this article was great. It's always frustrating that no single article could fully outline the problems with Crawley's work, or the BMJ's response to the concerns of CFS patients, but I thought this did a really good job of explaining things in a way that the general public could...
  10. Esther12

    News from Scandinavia

    The radio show sounds like the standard spin - ignore the complicated problems with the problems with the research being criticised, and instead present a simplistic narrative or 'controversy' over 'psychological' approaches that relies on anecdotes. Probably done by people who think they'd...
  11. Esther12

    ME/CFS services in the United Kingdom

    Particularly interested in how these people are planning to increase patients' self-awareness - is that a new one?
  12. Esther12

    Clinical and cost-effectiveness of the Lightning Process ... for paediatric chronic fatigue syndrome, 2018, Crawley et al (Smile Trial)

    It was the journal's fault for assuming they could trust Crawley & co's claim that their trial was prospectively registered. It wouldn't be fair to blame Crawley and her co-authors for that editorial failing.
  13. Esther12

    Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery - Harland, Crawley et al 2019.

    I'm only just skimming this, but thought I'd say that Crawley isn't an author on the PACE trial and clarify that it was a Lancet commentary from Knoop and Bleijenberg that made the BS "strict criterion for recovery" claim. Under Horton the Lancet has failed to correct it, but the claim wasn't...
  14. Esther12

    Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery - Harland, Crawley et al 2019.

    Hmmm... reference 12 is to the short Matthees piece pointing out the spin and misrepresentation seen in PACE's recover claims. The 'difficulty' there seemed to be that researchers were spinning their results. The other problems mentioned can be quite easily mitigated. A shame that they didn't...
  15. Esther12

    (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union - Strand, Nacul (EUROMENE) 2019

    It could be worth taking notice of if people like Helland and Strand are going to be shaping EUROMENE documents!
  16. Esther12

    NICE ME/CFS draft guideline - publication dates and delays 2020

    I'm still not expecting much of an improvement... which would be worse than nothing. This means I'm in no great rush. I think that they gave themselves too little time to get this right, with a committee that includes too many happy to get it wrong. If a delay means that the guidelines will be...
  17. Esther12

    My podcast: Medical Error Interviews

    TBH, what I've seen from Johnson makes him seem like someone who is wrapped up in his own story and makes misleading claims that encourage people to be dismissive of patient concerns. That's one way of saying it!
  18. Esther12

    Status of CFS/ME (2019) Brinth et al Danish Medical Journal (Ugeskriftet.dk)

    @Dx Revision Watch links to this presentation from Schröder: It lists RecoveryNorway as one of four web resources at the end, and starts by thanking his colleagues and co-workers: Michael Sharpe, Emma Rehfeld, Per Fink, Torben Jørgensen and WinfriedRief.
  19. Esther12

    Status of CFS/ME (2019) Brinth et al Danish Medical Journal (Ugeskriftet.dk)

    That is a more positive perspective... I feel like I've seen enough of this stuff! PS: I feel like I've gone on about this little example in a way that could imply I think it's more important than it is, just because I've been replying to others. I didn't mean to make a big thing out of it.
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