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  1. Jonathan Edwards

    Getting it wrong most of the time? Comparing trialists’ choice of primary outcome with what patients and health professionals want, 2022, Treweek

    I don't think that is right @Snow Leopard. In my phase I study of rituximab in RA the primary outcome I chose was C-reactive protein because I knew that for a small study that was open label and uncontrolled I was only going to get useful information from a highly objective measure. We have a...
  2. Jonathan Edwards

    [Protocol] Trans-auricular vagus nerve stimulation to reduce perioperative pain and morbidity

    This looks very problematic. To be robust the method has to make sure there is no way attitudes can influence. If bias is possible it will almost certainly occur, or at least one has to assume it may well have done.
  3. Jonathan Edwards

    Getting it wrong most of the time? Comparing trialists’ choice of primary outcome with what patients and health professionals want, 2022, Treweek

    A primary outcome measure has to reflect reliability as well as directness. If a direct measure is totally unreliable it is not suited to being a primary outcome. The whole point of distinguishing a primary outcome measure is to maximise the chances of getting a statistically significant...
  4. Jonathan Edwards

    Getting it wrong most of the time? Comparing trialists’ choice of primary outcome with what patients and health professionals want, 2022, Treweek

    From the abstract it looks as if the authors do not understand the process of choosing a primary outcome measure. The result looks pretty unhelpful for everyone.
  5. Jonathan Edwards

    Brain predictors of fatigue in rheumatoid arthritis: A machine learning study, 2022, Goni et al

    It isn't clear from the abstract whether the initial MRI findings predicted fatigue improvement or that the change in MRI over 6 months correlated with fatigue improvement. I cannot be bothered to try to find out because the whole thing looks like gibberish. Surely asking the patient how they...
  6. Jonathan Edwards

    Increased risks of cancer and autoimmune disease among the first-degree relatives of patients with ME/CFS, 2022, Moslehi et al

    It is likely that a small proportion of people diagnosed with ME in fact have an autoimmune disease. But equally, people often get given diagnoses like Sjögren's syndrome on very dubious grounds by overenthusiastic rheumatologists. The main issue for a study like this for me is that...
  7. Jonathan Edwards

    Increased risks of cancer and autoimmune disease among the first-degree relatives of patients with ME/CFS, 2022, Moslehi et al

    Not particularly, the pattern of incidence with age is not similar to autoimmune disease in general. Some autoimmune diseases have odd age incidence profiles like lupus and MS but even there the pattern is different. The data for ME may be biased but that is taking it at face value.
  8. Jonathan Edwards

    The Occurrence of Hyperactivated Platelets and Fibrinaloid Microclots in ME/CFS, 2022, Nunes, Pretorius et al

    I spoke to an academic haematologist with expertise in clotting today. They had not heard of any of the Pretorius work or the methods being used. The more I look at the pictures the less they mean to me.
  9. Jonathan Edwards

    United Kingdom: NHS East Kent Hospitals University - CFS/ME

    Such things are a thing of the past, I fear. Everyone at the top has lost the plot since the introduction of the 'internal market'. Fortunately there are one or two people like Peter Barry and Ilora Finlay, who care, but beyond that it is mostly self-driving robots.
  10. Jonathan Edwards

    Increased risks of cancer and autoimmune disease among the first-degree relatives of patients with ME/CFS, 2022, Moslehi et al

    I think UC has symptoms that sound very like ME, but the key thing about the cycles of symptoms in ME is that they do not seem to relate to any identifiable inflammatory disease. Although feeling fatigued after sitting on a chair with UC might be post-exertional and a similar malaise to ME I...
  11. Jonathan Edwards

    News from Doctors with ME

    This is a distraction, just as Trish says, but I think the metaphor was in use way before 2014. I wonder if it was hijacked by feminism. I have just been in a conversation with an eminent US physicist who said he trusted Google (tongue in cheek). A Welsh Nobel Prizewinning physicist replied...
  12. Jonathan Edwards

    News from Doctors with ME

    To me the use of glass ceiling seems reasonable, if stretched. I think it means limits due to vested interests within an establishment blocking justified progress. My concerns about this stuff is not sommuch the confused language, although it is, as the ham-fisted seeming approach that does not...
  13. Jonathan Edwards

    News from Doctors with ME

    If I were of the twittering kind, Which thank the Lord I'm notsir...
  14. Jonathan Edwards

    Functional Neurological Disorder (FND) - articles, social media and discussion

    I would be surprised, actually. I think these signs are valid if done carefully. It is not a question of activating reflexes so much as simple laws of levers - something we can do nothing about. To move one leg we need to do all sorts of things with our spinal muscles and muscles around the...
  15. Jonathan Edwards

    CPD Online College : What is ME?: scam

    This seems to be put out by a commercial organisation linked to Birmingham City Football Club and British Transport Police. Interesting.
  16. Jonathan Edwards

    Orthostatic Challenge Causes Distinctive Symptomatic, Hemodynamic and Cognitive Responses in Long COVID and ME/CFS, 2022, Vernon et al

    Indeed. The standard teaching in medicine for the last forty odd years has been that the diastolic is the more important for hypertension. In hypotension the pulse rate is probably more important than either.
  17. Jonathan Edwards

    Increased risks of cancer and autoimmune disease among the first-degree relatives of patients with ME/CFS, 2022, Moslehi et al

    My mum has (remarkably) rheumatoid arthritis and my wife, her sister and I have all had two cancers each. Nobody has ME. These things are around so studies have to be very careful.
  18. Jonathan Edwards

    Increased risks of cancer and autoimmune disease among the first-degree relatives of patients with ME/CFS, 2022, Moslehi et al

    Yes, this does not look to me to use reliable enough methodology to want to put much weight on it. A decent population based study with very good checking of data is needed. There may be correlations and they may be important but we all have relatives with diseases. Ulcerative colitis is...
  19. Jonathan Edwards

    The Occurrence of Hyperactivated Platelets and Fibrinaloid Microclots in ME/CFS, 2022, Nunes, Pretorius et al

    To be really honest those pictures look like a random selection of dirty slides. There does not seem to be much consistency in the bright objects. But those that are there have clear enough margins (remember that some may be blurred because of the depth of field) which suggests to me that this...
  20. Jonathan Edwards

    Closed 2022 Pilot study in Norway - Daratumumab in ME/CFS

    But the drug may block an effective response to vaccination for a month or more and also an effective antibody response to new variant.
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