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  1. R

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

    I agree about the need for transparency. And a competent, well-informed committee without COIs would be great in theory. In practice, it might be tricky to get the right people involved, however they were chosen. Many patients’ and clinicians’ preferred choices may not coincide with ours. As...
  2. R

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

    Agree with this. Given the broad support that the proposal has to date (notwithstanding the concerns that some of the signatories are reported to have expressed privately) I don’t think it’s realistic to tear it up and start again. But I’m wondering if we could/should lobby to modify the...
  3. R

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    @Andy Do you know if the expectation is that some results will be published by 14 May, or Chris intending to talk to the APPG about the results prior publication?
  4. R

    Rates of ME/CFS following Covid-19

    I think all we can say with certainty at this stage is that some people develop ME/CFS following Covid. As far as I understand, we don’t know if ME/CFS is caused by Covid-19 or any other virus. It could be that people who develop ME/CFS following infection would have developed ME/CFS anyway and...
  5. R

    Rates of ME/CFS following Covid-19

    People campaigning for anything have a tendency to believe and/or use unreliable data if it supports their objectives and vice-versa. I have always considered that to be unfortunate and wrong but there are numerous examples (not least in US politics) where it has be shown to be effective, at...
  6. R

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

    If we are close to that point, the question is, would that work have come sooner if something like this proposal had been enacted before? If we are not close to that point, the question is, will this proposal help us to arrive at that point sooner? We can’t know but I think the answer to both...
  7. R

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

    Thanks @Adrian and everyone else who’s helped with this. I’ve signed (with some reservations) and will share widely. One minor quibble: when you sign it asks for employment status. Options include “disabled” and “unemployed”. I am disabled but that’s not my employment status. I don’t consider...
  8. R

    Illness beliefs and treatment outcome in chronic fatigue syndrome, 1998, Deale, Chalder and Wessely

    I think they were studying whatever they thought had the best chance of producing a positive result, in trials designed to maximise the probability of producing a result which could be reported as positive, with the intention of applying the reported findings to anyone who met their broad...
  9. R

    Placebo effect discussion thread

    Interesting. From the Scientific American article: “At Oxford, Kabir, psychiatry professor Belinda Lennox and their colleagues are currently conducting a clinical trial to examine whether rituximab, an antibody used to treat arthritis and other autoimmune disorders, can effectively treat...
  10. R

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    I find these ideas and discussions both fascinating and also unsettling to think about (because of my vulnerability as a patient). If it was true – and we must at least accept the possibility that it is true in the absence of evidence to the contrary – then how could it be proved or falsified...
  11. R

    Placebo effect discussion thread

    I think I understand your point but I would be interested to know how this sentence ends.
  12. R

    Placebo effect discussion thread

    If the subgroup that I describe above existed then we would not expect those patients to respond to CBT and GET, only to biomedical interventions that they were sufficiently convinced would help them.
  13. R

    Placebo effect discussion thread

    The same possibly has occurred to me, although it would be surprising to me if such people did not respond in trials of psycho-behavioural interventions. Presumably, the motivation for many people who volunteer for trials is because they believe the invention may help them. But perhaps it could...
  14. R

    Placebo effect discussion thread

    Sorry, I'm late to this thread. Do you mean that there may be a subgroup of people with an ME/CFS diagnosis whose symptoms develop as a consequence of information they acquire about the illness (ie their beliefs), who may respond positively to a 'dummy' biomedical intervention that they believe...
  15. R

    Review Interventions for the management of long covid post-covid condition: living systematic review, 2024, Zeraatkar, Flottorp, Garner, Busse+

    Thanks, Dave. Your letter ends: My Rapid Response, submitted in December, highlighting the absence of any peer review documents was never published, so I’m pleased you are chasing this up.
  16. R

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

    Free link to article: https://archive.ph/gWwK8
  17. R

    Deep Sequencing of BCR Heavy Chain Repertoires in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Ryback et al

    Yes, and we have @Simon M to thank for Chris jumping in: https://theconversation.com/ignored-blamed-and-sometimes-left-to-die-a-leading-expert-in-me-explains-the-origins-of-a-modern-medical-scandal-241149 (Thread here)
  18. R

    Study links oral microbiome to cognitive function in older adults

    “Dental flossing may lower the risk for incident ischemic stroke, cardioembolic stroke subtype and AF”: https://www.ahajournals.org/doi/10.1161/str.56.suppl_1.19
  19. R

    Study links oral microbiome to cognitive function in older adults

    I didn’t have you down as a Times reader.
  20. R

    Deep Sequencing of BCR Heavy Chain Repertoires in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Ryback et al

    I’m very late to this paper and thread, and not well enough to read through it all in detail. Does anyone know if anyone know if there is a good lay summary anywhere? If not, would anyone like to post one?
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