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  1. Jonathan Edwards

    Frequent IgG subclass and mannose binding lectin deficiency in patients with CFS, 2015, Guenther, Scheibenbogen et al

    Not sure what your question is. A lot of ME/CFS services are run by immunology/infectious disease departments in the first place - or at least they act as a primary route of referral for suspected ME/CFS. Amolak Bansal is an immunologist. My cousin who saw a lot of ME/CFS was an infectious...
  2. Jonathan Edwards

    The Effectiveness of Actively Induced Medical Rehabilitation in Chronic Inflammatory Bowel Disease (MERCED Study), 2020, Hüppe et al.

    I get the impression that in the UK this study would be considered unethical. One group were advised how to get rehab and the others were not. For those in the rehab group to bother they would have to be told rehab was good. The other group would have to be told something different. Maybe I have...
  3. Jonathan Edwards

    UK: Priority Setting Partnership: Medically Not Yet Explained Symptoms - 10 top priorities published July 2022

    To me it belongs to this conversation: "Did you go out into the garden yesterday evening?" "MNYES (wait for it)" "Did you lock the kitchen door when you came back in?" "MNYES, erm, I think so, er maybe not." "How many times have I told you... And so on. So it's: "Do you know what's wrong with...
  4. Jonathan Edwards

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

    Wonderful that they base their case on a Canadian trainee psychiatrist's hot air.
  5. Jonathan Edwards

    Long COVID or [PASC]: An Overview of Biological Factors That May Contribute to Persistent Symptoms, Proal & VanElzakker, 2021

    I am afraid to me it reads as a scattershot blast of old and rather tired ideas.
  6. Jonathan Edwards

    Complement Component C1q as a Potential Diagnostic Tool for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Subtyping, 2021, Castro-Marrero et al

    The only long term acquired imbalance I can think of would be due to an autoantibody to an inhibitor or complement clearance process. I would expect the effects of that to be both unstable and evident in some obvious change in levels - markedly low levels of some factor like CD55. Maybe not but...
  7. Jonathan Edwards

    Survey:Improving NICE guidance

    Indeed. I may have been a bit corrosive in my responses, which might have got me off the list as usual.
  8. Jonathan Edwards

    Complement Component C1q as a Potential Diagnostic Tool for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Subtyping, 2021, Castro-Marrero et al

    I was thinking that a complement imbalance might make some sense for ME. It ought to be too much complement to make it different from complement depletion as in lupus. High C1q would be too much. Low MBP would allow C1q to build up. It would point to a problem with too much classical pathway...
  9. Jonathan Edwards

    Survey:Improving NICE guidance

    You must have given good answers.
  10. Jonathan Edwards

    A Comprehensive Update of the Current Understanding of Chronic Fatigue Syndrome, 2021, Noor et al

    This is just an essay done by a trainee sent off as a review publication. The first author probably knows little or nothing about CFS.
  11. Jonathan Edwards

    The Presentation of ME/CFS Is Not Influenced by the Presence or Absence of Joint Hypermobility, 2021, Vogel, Rowe et al

    JH evolves during childhood but is probably largely genetically programmed. It can probably be modified by stretching activities during childhood - maybe in ballet dancers - although I am not sure there is evidence on this. By the age of 18 nearly all ligament insertions have ceased growing and...
  12. Jonathan Edwards

    The Presentation of ME/CFS Is Not Influenced by the Presence or Absence of Joint Hypermobility, 2021, Vogel, Rowe et al

    I think the limited evidence comes from inadequately controlled studies from Rowe and from Knoop.
  13. Jonathan Edwards

    The Presentation of ME/CFS Is Not Influenced by the Presence or Absence of Joint Hypermobility, 2021, Vogel, Rowe et al

    So it looks as if when hyper mobility and ME/CFS occur together they don't have much to do with each other. All Rowe now has to do is a proper population study to check his continued assumption that hypermobility is a 'risk factor' for ME/CFS. I bet it isn't. A Beighton score of 4 in a young...
  14. Jonathan Edwards

    Shared Individual Formulation Therapy (SIFT): an open-label trial of a new therapy accommodating patient heterogeneity in [FND], 2021, Gutkin et al

    In clinical pharmacology it takes tens of thousands of scientists decades to develop treatments, 95%+ of which fall at one hurdle or another, to get a few effective treatments. In clinical psychology all you need to do is ask the patient some gossipy questions about themselves and dream up a...
  15. Jonathan Edwards

    Number of musculoskeletal pain sites leads to increased long-term healthcare contacts and healthcare related costs, 2021, Mose et al

    I am afraid so. I am fairly sure that this is a group of physios who have had the brilliant idea that what patients need is more physio: lots of nice exercises taught by terribly nice physios who really care for the patients. They know nothing about the causes of joint pain and have no idea why...
  16. Jonathan Edwards

    Will it ever be reasonably safe for PwME to go back into society, post-Covid?

    I am primarily talking about UK. ICUs are full at present so things are being run at the absolute limit of what might be justifiable (if you even think one person in ICU is justifiable). My point is that despite pretty much letting loose the numbers are high but not rising. That means that...
  17. Jonathan Edwards

    Hypothesis The Enterovirus Theory of Disease Etiology in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Critical Review, Hanson et al (2021)

    I think it is reasonable. The only real reason why anyone is interested in enteroviruses in ME is that way back in the time the Royal Free outbreak neurological features raised the suggestion of a novel enterovirus. But it was never found and the neurological features are not recognised today as...
  18. Jonathan Edwards

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    A jab of Kenalog would probably make most people feel zipped up and free of lots of symptoms like sore lymph nodes and joint pains. The downside is that steroids over a period of time have lots of adverse effects. In the 1980s and 1990s rheumatologists used shots of steroid a lot because the...
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