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  1. Jonathan Edwards

    RCPCH conference 2019 abstract: Tea and cake: an opportunity for young people and their parents/guardians to eat cake and share ideas, Bashton et al

    A major drawback of this study is that it is not randomised. I think at minimum subjects should have been randomised to Dundee, Battenburg, Schwarzforestetorte, and low fat carrot cake. There should also have been a control group with bread and jam and a combination group with both (but only...
  2. Jonathan Edwards

    new blog post by skeptic doc Harriet A. Hall MD: Chronic Fatigue Syndrome and Rituximab

    The giveaway is that she refers to the delayed response as if it was clear evidence that the phase 2 study could have been seen to be a fluke. Which is a more or less direct lift from a comment from a Dutch BPS proponent in the comments section of PLOSONE when the paper came out. Below that...
  3. Jonathan Edwards

    Havana Syndrome: U.S. and Canadian diplomats targeted with possible weapon causing brain injury and neurological symptoms

    I don't claim to know what illness Cuban staff had, but any debate on topic needs to be informed by new 'whole brain' understanding of functional disorders such as PPPD and not by outdated prejudice That seems pretty much silly point scoring. And on the S4ME gold standard scale that would be -3...
  4. Jonathan Edwards

    What is the normal value of the neutrophil-to-lymphocyte ratio? (2017) Forget, De Kock, et al.

    I don't follow why this 'test' which is a ratio of two meaningful tests with different implications, should be of any extra value.
  5. Jonathan Edwards

    RCPCH conference 2019 abstract: When chronic fatigue syndrome leads to mutism, Moeda et al

    This case supports that establishing the accurate diagnosis and early symptom management are crucial for rehabilitation in CFS. Cognitive impairment may be significantly debilitating. Physical and cognitive recovery occurs at different stages. A multi-disciplinary patient-centred approach...
  6. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    The issue of peer reviewers not challenging the uncritical mention of LP is important though. It seems to show that biomedical science exists within an intellectual framework where quality is irrelevant. And that of course has direct implications for the impact on guidelines.
  7. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    I think we are all agreed that the review authors should have realised the problems with LP. A grapevine is also highly likely to exist. However, that still leaves the possibility that they were unaware of David's existence until now. All that I think David and I are pointing out is that they...
  8. Jonathan Edwards

    new blog post by skeptic doc Harriet A. Hall MD: Chronic Fatigue Syndrome and Rituximab

    I don't remember seeing that. Maybe I forgot about it because she doesn't act sally address any of the key arguments - just assumes what she is quoting means something.
  9. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    There is a risk but in my experience if you are sensible about what objective corroboration you could get for even the most subjective things you can do an awful lot better than has been done so far. You can also make use of 'role-playing neutral' studies using credible sham treatments and...
  10. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    Exactly. David is doing his best to change that. I have been in a difficult position with potentially being accused of competing interests (although I don't have any). However, I think my position may be a bit less difficult now so I am considering getting involved.
  11. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    There were all sorts of controversies that occasionally I got to hear of. Particularly in the alternative medicine area - which is what this is. There was a big scandal in the 1970s about rheumatologists doing trials with dodgy methodology. I knew about the detail because I worked for one of the...
  12. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    Indeed. But so far the stuff on SMILE has not as fr as I can see reached visibility. That is un the hands of the editors. But unless the editors choose visibility things remain hidden.
  13. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    I just don't think it is necessarily fair to think they would have an obvious way of finding out. We are bombarded by information but we are used to specific channels. Those of us here think David's blog is blaring out across the Atlantic. But for 99.95% of the population it is completely invisible.
  14. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    Yes but a clinical scientist does not use Google to find out about research. They go to pubmed. I quite agree that people should see for themselves that the paper is problematic but I am sceptical that we should expect them to be aware of debate on social media.
  15. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    I don't think that is realistic. Who accesses 'the general press' these days? I read one paper online and David's name has never come up (the Guardian). I never see the other papers unless someone points something out on the forum. And even if someone has heard of David they are not necessarily...
  16. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    But how would they know of the existence of David's blog unless a patient had brought it to their attention? Patients who are aware of the blog may well not mention it because they are afraid of sounding bolshy. Why would an ME clinician google 'virology blog'?
  17. Jonathan Edwards

    new blog post by skeptic doc Harriet A. Hall MD: Chronic Fatigue Syndrome and Rituximab

    What Dr Hall seems to have missed is that the Haukeland group rituximab programme is about the first piece of high quality clinical science in ME and has shown everyone else how things should be done. Hall clearly fails to understand that an apparent delayed response is expected in autoimmune...
  18. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    I guess that the 'controversy' for SMILE has been aired in social media rather than in published literature. I can imagine that clinicians and researchers in the field may not yet be aware of it. The situation is different from that for PACE where the controversy is in thepublishezd literature...
  19. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    When considering what to provide NICE as testimony n the problems of clinical trails in ME/CFS I did not go in to the Lightning process specifically, other than to note that the apparent success of SMILE illustrates the problems with other trials. I had forgotten the significant ethical...
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