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  1. R

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

    Anyone can reply. Many of us on here who have had rapid responses and letters and articles published are patients with no medical or scientific qualifications. BMJ seems to publish nearly all rapid responses so it’s not a long shot. I’m sure people on here would be happy to give feedback on a...
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    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    I wonder if Peter Barry and Ilora Finlay could be persuaded to reply. If anyone else is writing, it might be worth citing their response to the JNNP anomalies article: https://jnnp.bmj.com/content/95/7/671
  3. R

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

    Yes, I think it would be useful if someone could submit a response making this point. If nobody else does in the next few days I may do it if/when I feel up to it, but would be pleased if someone else would like to do it.
  4. R

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

    Yes, excellent response once again from Michiel. Thank you. My only very minor criticism is that I think the language could have been a little less conservative. Michiel writes: “This approach, however, is far from new and has been tested in randomized trials with limited success.” Whilst I...
  5. R

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

    I asked ChatGPT to write a critical response. After a few prompts, this is what it came up with: To the Editor, The recent article, “Patients with severe ME/CFS need hope and expert multidisciplinary care” (BMJ 2025;389:r977), expresses concern for individuals living with severe myalgic...
  6. R

    Published poems by Veronica Ashenhurst, who has Severe ME

    I’m pleased that you’ve read some of my poems. I don’t think of myself as a poet – just someone that writes poems and songs occasionally. One of the unfinished poems in the junk yard of my mind is about is about identity. I will share it if I ever manage to finish it – or at least get it to a...
  7. R

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

    I don’t disagree but it is a measure of the power imbalance that that even when being sidelined they are commissioned to write an opinion piece for the BMJ. Here’s hoping that one day some of us will be commissioned to write an opinion piece for the BMJ on the institutional and individual...
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    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Sadly, I’m not sure that any biomedical evidence will deter them from promoting their therapies. As we have repeatedly pointed out, the valid arguments about the inefficacy of CBT/GET are independent of aetiology, and that cuts both ways: when we understand the mechanisms of ME/CFS, I wager that...
  9. R

    Published poems by Veronica Ashenhurst, who has Severe ME

    Thanks for sharing this, Veronica. I particularly enjoyed hearing your voice reciting the poem. If I had known your nationality before, I had forgotten, and I congratulated myself on recognising your accent as being Canadian rather than American – possibly because I recognised the similarity...
  10. R

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

    Would you say that the data is starting to point towards neurologists as being the physicians who ought to be taking responsibility for running ME/CFS clinics? [edited to make sense!]
  11. R

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

    At the risk of appearing foolish, I meant antigen, although I’m not sure if that is the right term. What I’m wondering is whether if is possible (even if it is improbable) that foreign molecules from a microbe or an environmental toxin could be acting directly or indirectly on the synapses to...
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    Preprint Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis, 2025, Zhang+

    Sorry if this is a dumb question but could it be an antigen acting on the synapses which is causing symptoms?
  13. R

    United Kingdom: News from #There for ME

    It was clear to me. Sorry if quoting your post caused confusion!
  14. R

    United Kingdom: News from #There for ME

    This recent paper by Gemma Samms and Chris Ponting estimates the prevalence in the UK as 404,000 (0.6%): https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-025-22603-9 Discussion about that paper and prevalence estimates here...
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    United Kingdom: News from #There for ME

    Thanks to #ThereForME for coordinating this. Good to have so many organisations speaking with one voice. Apart from S4ME, I note that ME Research UK and Invest in ME Research are not signatories. My understanding is that there is considerable doubt about the reliability of these estimates. I...
  16. R

    Collection of evidence for the efficacy of CBT/GET

    I just want to highlight that the problem with the subjective outcomes in PACE etc. is that they are not corroborated by improvement in objective outcomes. I’m pretty sure Jonathan makes this point in his JHP paper and/or testimony to NICE. If improvements in subjective outcomes in unblinded...
  17. R

    What are the top replicated ME/CFS findings?

    @dave30th might be the best person to help with this. PACE, FINE, FITNET-NHS and GETSET, all provide evidence that CBT and GET are not effective treatments for ME/CFS. I would suggest that refs should include Wishere et al’s reanalysis (and subsequent correspondence), and NICE Guideline...
  18. R

    What are the top replicated ME/CFS findings?

    Perhaps the most important replicated results we have is that CBT and GET do not have a clinically significant therapeutic effect.
  19. R

    What are the top replicated ME/CFS findings?

    I had the same thought. The replicated findings to date tell us what we know isn’t going wrong. That might not be sexy, but it is important and would be useful to highlight.
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