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  1. V.R.T.

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Thank you all for your kind words. I wrote it almost on autopilot but rereading it as published I had that sense of 'how could this have happened?' that I'm sure many of you can relate to. @Peter Trewhitt I was worried about that too but didn't have the spoons to go trawling for references. I'm...
  2. V.R.T.

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Its heartening to see it in print so quickly. I doubt it will make much of an impact but it feels important to have it there. Unfortunately I left my name etc on the end of the text when I copied it over so it appears twice at the end of the article!
  3. V.R.T.

    Three part article on cognitive therapies, mindfulness, Garner etc., 2025, Long Covid Advocacy Substack article

    I'm hoping the deranged tone is a sign they are losing the argument. But I am so sick of the claim that telling people the truth is in fact causing disability. The BPS approach literally caused my disability in the sense that while I was technically disabled before (and absolutely support mild...
  4. V.R.T.

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Pretty sure I submitted it but the site was glitching a bit so not 100% sure.
  5. V.R.T.

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Thank you. Concerned about linking to Wessely directly as I haven't included other references. May just leave as a reference for those in the know
  6. V.R.T.

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Final draft, I have added a penultimate paragraph @rvallee will perhaps appreciate 'Furthermore, the so-called biopsychosocial approach is always presented as a new and cutting-edge approach to treating people with ME/CFS when it has been the dominant treatment paradigm in this country and...
  7. V.R.T.

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Hi all, popping back up to ask for feedback on my rapid response, I'm not sure I've struck the right tone but I thought maybe the sort of patient experience perspective will be valuble.
  8. V.R.T.

    [UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

    Yes, I had a similar experience with music, was just finding my way back to it when my health declined. Hopefully if we have a finding breakthrough, and/or secure more funding from a proposal like this, some of those who chose another specialisation might be enticed back...
  9. V.R.T.

    [UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

    I will say as a small counterpoint that I am sure there will be good young researchers who are dissuaded by these arguments, as I was dissuaded from pursuing a career in music when I was young. Not that aspiring researchers (or musicians) should be shielded from the financial truth of things...
  10. V.R.T.

    [UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

    I'm certain I saw Chris Ponting say in an interview last year (I thought with Jennie Jaques or David Tuller but I've scanned the transcripts for both and can't find it) that he can't currently recommend that young researchers under his tutelage come into the field of ME research for precicely...
  11. V.R.T.

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    No it would certainly be a minority. But it's something that occurs to me sometimes when we see the callousness and dishonesty with which they take the deaths of ME patients and use them to further their arguments.
  12. V.R.T.

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    The chilling thing is that statistically, in terms of the numbers of people with ASPD (sociopathy/psychopathy) in high flying fields, there may well be a proportion of these researchers who know they are causing harm and do not give a toss.
  13. V.R.T.

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    I would be breaking the site rules if I said how this makes me feel. Instead I'll just invite us all to imagine the state of Miller's reputation in a few years time if the science comes together as predicted...
  14. V.R.T.

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Can patients reply or is it just 'professionals'? Aware it's a long shot but my experience (like many others I'm sure) serves as a very direct rebuttal to the ideas expressed in this piece (although saying that I haven't made myself read the entire thing yet) It might be valuble for doctors on...
  15. V.R.T.

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Yes and whats worse the abuser is going round convincing everyone we're not to be trusted and they need to abuse us too for our own good... I need to see a gastroenterologist and this is giving me even more trepidation. When I spin the wheel with doctors it so often comes up BPS.
  16. V.R.T.

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    I cannot put into words how utterly demoralising it is to see the BMJ not only publish but request this article, especially during ME awareness week. That timing cannot be an accident. The most dangerous thing anyone ever gave me for my ME was false hope. Even if we cannot hold individuals to...
  17. V.R.T.

    Preprint Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis, 2025, Zhang+

    I know ME Research UK has funded some of Rob Wusts muscle biopsy work, so they might perhaps be a good fit?
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