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  1. Jonathan Edwards

    Reclaiming terminology for ME/CFS

    I actually think terms like fibrofog get things backwards. How can I help, Mrs Norton? I have terrible fibro fog today. Ah, then you must have fibromyalgia Mrs Norton, try these exercises. Or: How can I help Mr Crumhorn? I am getting these Crohn cramps in my stomach. Ah, of course, Mr...
  2. Jonathan Edwards

    United Kingdom: Newcastle-upon-tyne Hospital Trust

    For example, it is flawed logic to suppose that a trial of CBT or other psychological therapy should somehow attempt to separate the effect of the therapy per se from the effect of the therapeutic relationship. In real clinical practice, it is impossible to have one without the other, and a...
  3. Jonathan Edwards

    United Kingdom: Kings College London; South London and Maudsley NHS Trust

    Do have any meaningful trial evidence though? The problem we have with GET and ME-style CBT is that medical organisations are claiming that 'some people find them useful' on the basis of clinical experience, which we know is unreliable. People will say 'thank you, I found that useful' just...
  4. Jonathan Edwards

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I came to the conclusion that the make up of the author group and IAG was quite appropriate. I agree with Caroline that this re-hash review is pointless for the wider world. But I thought it might at least be a chance to bang some heads together. The NICE committee representatives came out...
  5. Jonathan Edwards

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I am not sure that one can assume that. Julia Newton may not have wanted to waste time editing something produced by therapists designed to save the jobs of therapists when she herself seems to have largely withdrawn from ME research. Those Newcastle comments had to have come from a therapist...
  6. Jonathan Edwards

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Yes, they love a bit of B to go with the P and S. The odd cytokine or bendy neck or blood clot. I don't see blood clots altering the landscape any time soon. If this was a real story there would be grants funded all over the shop by now. All university hospitals know about blood clots yet all we...
  7. Jonathan Edwards

    UK: Guardian: "NHS to give therapy for depression before medication under new guidelines"

    The obvious choice, as you suggest, is old fashioned counselling. It used to be done by GPs and by psychiatrists - no need to call it anything more fancy. But like butter in a dish, counselling has been replaced by the little packages at the checkout. Counselling by someone other than family...
  8. Jonathan Edwards

    UK: Guardian: "NHS to give therapy for depression before medication under new guidelines"

    It sounds as if instead of either drugs or 'proper CBT' the idea is just to suggest stuff, including 'sort-of therapy', gym and meditation. People who are depressed know that they could go to the gym or meditate but they have lost the drive to do so. I can't see then point of parcelling this up...
  9. Jonathan Edwards

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    This comment is interesting in two respects: Despite these therapies being recommended in the 2007 NICE Guideline, many clinical staff are aware of research developments revealing more about the underlying physiological processes and have listened to feedback from patients indicating that these...
  10. Jonathan Edwards

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    But then what is recognised by NHS psychotherapists seems to be based on magical thinking rather than evidence anyway! I bet the 'need for adaptation' is just something made up because it sounds as if it ought to be so. Either that or they found autistic people just couldn't understand what the...
  11. Jonathan Edwards

    Is Cognitive Change Necessary to Alleviate Symptoms in Patients With Functional Somatic Syndrome?, 2021, Maroti and Johansson

    Although these authors do not seem to be up to speed on evidence they do seem to have the right idea in some ways. They are questioning the validity of the false belief paradigm and the idea that treatment has to address beliefs. Their final conclusion is pretty sensible: To establish which...
  12. Jonathan Edwards

    More Than 100 Persistent Symptoms of SARS-CoV-2 (Long COVID): A Scoping Review, 2021, Hayes et al

    I see the exercise of counting symptoms as completely facile because we use symptoms for a range of different purposes and which ones are relevant depends on the purpose but the number is irrelevant. The first task is to work out what we think is wrong. That is usually dependent on a...
  13. Jonathan Edwards

    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    But everyone knows that you are biased @adambeyoncelowe - you were on that dreadful committee.
  14. Jonathan Edwards

    UK: Secretary of State for Health and Social Care met with ME/CFS researchers Nov 2021

    I see that CGATist is Chris Ponting and his name comes first. That is how it should be.
  15. Jonathan Edwards

    NHS England Long Covid collaboration: Assessment Tool Testing - call for beta testers

    I am not sure that people ho make up tings like this realise there is a difference.
  16. Jonathan Edwards

    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    I think the timing is too odd. Either the authors sat on the paper for nearly a year after being asked for minor revisions, or, to make more sense, there was active collusion from an editor in terms of timing of acceptance and publication.
  17. Jonathan Edwards

    NHS England Long Covid collaboration: Assessment Tool Testing - call for beta testers

    It looks pretty ghastly to me. Masses of questions that would be impossible to know how to answer. One to one human communication is more subtle and powerful.
  18. Jonathan Edwards

    Updates on status of ICD-11 and changes to other classification and terminology systems

    But these tests have no proven value for diagnosis of any of the proposed categories. This stuff is make believe and I think it is important that both physicians and patients get clear about that. Diagnostic categories in other areas are not dependent on wishful thinking tests that private labs...
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