Search results

  1. R

    UK - NICE guideline on Long Covid

    I’m not entirely clear what this means. Are they suggesting that people who meet the diagnostic criteria for ME/CFS following suspected Covid-19 should be diagnosed with ME/CFS and therefore treated according the guideline for that condition? If that is so, it seems like a sensible approach...
  2. R

    Substrate utilisation of cultured skeletal muscle cells in patients with CFS, Tomas et al, 2020

    There is a good summary of this study by ME Research UK (who were the funders): https://www.meresearch.org.uk/research/use-of-glucose-for-energy-production/?fbclid=IwAR2MI8sw9rgWJwCIkMUB--X9qdbtluU7HDTFsnMb4oqG__zSfIeBp4D7MqQ The MERUK summary concludes:
  3. R

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

    Yes, but wouldn’t it be great if the ME Guideline didn’t just copy the same mistakes that are made with guidelines for other illnesses but actually alerted people to the problems with bad research in therapies for all illnesses – and helped to raise the standards of all guidelines.
  4. R

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

    In one study Chalder and colleagues found that people with MS who had CBT were less fatigued than healthy controls: https://pubmed.ncbi.nlm.nih.gov/18256342/ @Tom Kindlon referenced this study in his response to Cochrane review of exercise...
  5. R

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

    Thank for the blog @dave30th. You write: It may be harder to make the case that PACE-type CBT is harmful, but the psychological harms should be obvious to anybody who accepts that ME is not perpetuated by unhelpful beliefs – particularly as CBT is a psychological intervention designed and...
  6. R

    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    Call me an old cynic – and I appreciate that you know a lot more about this than me, Adam – but I would be surprised if the eminent members of the BPS lobby haven’t got a pretty good idea of what the new Guideline is going to look like. They seem to have a pretty strong omertà, and the pro...
  7. R

    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    YES. This is the point, which needs to be reiterated again and again and again. What BACME [edited to correct acronym] needs to explain is why they are rejecting the inflexible approach? Do they acknowledge the problems with the RCTs? Do they accept the validity of the evidence of harms? What...
  8. R

    CBT combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study, 2020, Wyller et al

    The above link states: “This has undergone editorial and peer review as a new submission. It has been published with the DOI http://dx.doi.org/10.1136/bmjpo-2020-000797, and clearly links back to this retracted version so that the history of the paper can be seen.” Clearly links? You did well...
  9. R

    Persistent symptoms after Covid-19: qualitative study of 114 long Covid patients and draft quality criteria for services, 2020, Greenhalgh et al.

    Only mention I found of ME/CFS: The conclusion states: Unique? As far as I can see there is no explanation of what the multi-disciplinary rehabilitation services should look like. This (from Box 1) doesn’t really tell us much: I couldn’t see any mention of pacing or PEM, which is odd as...
  10. R

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    For some reason Professor Greenhalgh, who appears to be taking a lead on long-covid, has deleted her tweet congratulating Dr Gerada on being made a dame so I’ve attached a screenshot. As far as I’m aware she still hasn’t made any comment on the similarities between long-covid and ME/CFS, or...
  11. R

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Encouraging to get a re-Tweet from Jane Garvey (presenter of BBC Woman’s Hour):
  12. R

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Just to clarify, further to what I wrote above, I completely agree with Tom and others on this. If someone meets the case definition of ME/CFS then they have ME/CFS, whether their illness started with Covid-19 or anything else. I understand why such patients may look at the way people with...
  13. R

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I’ve not kept up with this thread recently so apologies is this has already been posted: BBC Radio 4, 11am Tuesday, 29 September: Long Covid, presented by Adam Rutherford: https://www.bbc.co.uk/programmes/m000mzms BBC Blurb: One of my concerns about linking long-covid with ME, is that it...
  14. R

    BMJ letter from LongCovid doctors.

    After my FT letter, I received an email from a scientist who told me that he was “attacked” by the KCL psychiatrists et al at a Royal Society of Medicine meeting in the 1980s. They claimed that his data could not be trusted because he was diagnosed with post-viral fatigue syndrome and he had...
  15. R

    BMJ letter from LongCovid doctors.

    My motivation for posting these questions was primarily to draw the issues to the attention of doctors who follow him on Twitter, and particularly to the 39 doctors who wrote to the BMJ. SW has not replied to any of my questions yet but his co-author, Prof Anthony David, has:
  16. R

    BMJ letter from LongCovid doctors.

    In the BMJ letter the 39 “doctors as patients” write: The above reminded my of Trisha Greenhalgh’s negative comments about ME/CFS patients in her BMJ article “Towards an institute for patient-led research”...
Back
Top Bottom