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  1. Nightsong

    Is Long Covid a type of ME/CFS?

    IoM has "lasts for more than 6 months" as a criterion. The new NICE ME/CFS guideline specifies "confirmed after 3 months of persistent symptoms" (s1.3.2); the previous NICE guideline, CG53, specified 4 months in an adult and 3 months in a child or young person (s1.3.1.1).
  2. Nightsong

    ME Assoc: How Many People in the UK have ME/CFS?

    G93.3 may be the ICD-10 code that currently best reflects ME/CFS but what we do not really know is if that is how it is being used by NHS hospitals in practice. In particular, I'd like to see how coding rates for idiopathic fatigue and the old neurasthenia code (R53 and F48.0, if memory serves)...
  3. Nightsong

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    In addition to "Managhan", there's also "PACE trail" and "medial scandal" (surely it's a lateral scandal as well!) Also, I thought it was Queen Mary University, not Queen Mary's... and was it a judicial review? I seem to remember it was an ICO tribunal, but I might be wrong about that one.
  4. Nightsong

    An Update of a Theory

    From Psoriasis and pregnancy (J Cutan Med Surg. 2002 Nov-Dec;6(6):561-70)
  5. Nightsong

    A phase IIa double blind, [RCT] of Tocilizumab to investigate the effect on [HRQOL] in adults with Long COVID and persistent inflammation (PHOSP-I)

    Yeah, I was curious about that too. There's a longer list of exclusion criteria on this page: https://www.isrctn.com/ISRCTN46454974 They're doing IGRA for TB (criterion 14) and excluding patients with "signs of active infection" (11), abnormal liver function (9), neutropenic & thrombocytopenic...
  6. Nightsong

    A phase IIa double blind, [RCT] of Tocilizumab to investigate the effect on [HRQOL] in adults with Long COVID and persistent inflammation (PHOSP-I)

    Looks like the PHOSP-I trial: https://www.phosp.org/phosp-i/ https://leicesterbrc.nihr.ac.uk/first-participant-phosp-i/ https://bepartofresearch.nihr.ac.uk/trial-details/trial-detail?trialId=49777&location=the UK&distance= https://www.isrctn.com/ISRCTN46454974
  7. Nightsong

    Trial Report Explanation for symptoms and biographical repair in a clinic for persistent physical symptoms, 2024, Burton

    Looking up the REC application number in the PDF leads to these associated webpages: https://www.sheffield.ac.uk/ctru/current-trials/mss3 https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/multiple-symptoms-study-3/ Wasn't Burton on the NICE ME/CFS...
  8. Nightsong

    Why are psychologists and rehabilitationists so unaware that their research, questionnaires and treatment can cause harm?

    A few random thoughts: There seems to be a belief in the world of psychology (& social science) that good intentions are sufficient to protect against harm. By contrast in the hard sciences and among physician-scientists you're disabused of that notion very quickly indeed. There also seems...
  9. Nightsong

    Cass report, quality of evidence in evidence-based medicine and double-blinding

    One aspect I found troubling is that Cass wanted the NHS clinics providing gender-related care to provide the medical records of their patients to her preferred group of researchers at the University of York on a opt-out basis on the grounds that, because they planned to look at ~9000 records...
  10. Nightsong

    Wakefulness-promoting agents for severe fatigue: to use or not to use? 2024 De Wit et al

    Modafinil didn't feel like a stimulant to me (well, it doesn't feel like caffeine and it didn't feel like taking d-amphetamine as a student long ago). It apparently acts via a completely different mechanism (orexinergic) to either the amphetamines and their analogues or to caffeine. The only...
  11. Nightsong

    Longitudinal Cytokine and Multi-Modal Health Data of an Extremely Severe ME/CFS Patient with HSD Reveals Insights... 2024 Jahanbani et al

    The logic of this simply doesn't follow to the point that I'm surprised it got past peer review. The authors resurrect the Th1/Th2 "imbalance" hypothesis - if I recall correctly a decade or so ago there were various papers claiming that such an "imbalance" was implicated in the aetiology of ME...
  12. Nightsong

    Basic questions on terms and methodology used in clinical trials

    There was also a hypothesis that CFTR mutation (cystic fibrosis) could confer protection against both cholera and infection by tubercular mycobacteria, although I'm not sure if that panned out.
  13. Nightsong

    Who is Simon Wessely?

    Copied to thread on Shorter This has just reminded me of something. Many, many years ago I posted a bunch of "bad ME quotes", derived solely from my own reading, to a now-defunct Google (or was it Yahoo? or maybe even Usenet?) group. I think there may be some limited overlap with Williams'...
  14. Nightsong

    Edward Shorter’s view of Chronic Fatigue Syndrome

    Copied from the Wessely thread This has just reminded me of something. Many, many years ago I posted a bunch of "bad ME quotes", derived solely from my own reading, to a now-defunct Google (or was it Yahoo? or maybe even Usenet?) group. I think there may be some limited overlap with Williams'...
  15. Nightsong

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    Indeed, which is why I mentioned that I would've liked to see testing for a wider set of markers. Both aldolase & LDH are more widely expressed, having central roles in glycolysis, & obviously they have far lower sensitivity & specificity for muscle injury but nonetheless might well have been...
  16. Nightsong

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    Thanks, I missed that post - your point about the timings is well made, although I think if there were an atypically high exercise-induced CK elevation in ME patients I expect there would've been a number of case reports already and we would know about it by now. Nonetheless, a very interesting...
  17. Nightsong

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    And if it is significant there should be corroborative biochemical evidence of this - a very quick skim of the paper shows that they tested for CK & there was no elevation. Perhaps it might have been useful to test for other potential markers (off the top of my head: lactate dehydrogenase...
  18. Nightsong

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

    I think we need to look at this at two different levels. Firstly, from the perspective of a person diagnosed with "FND" they have remarkably few options. Unlike pwME who have always had (a small number of) sympathetic physicians & specialists the lot of someone with (say) pseudoseizure has...
  19. Nightsong

    New Daily Persistent Headache (NDPH): another enigmatic and frequently post-infectious illness?

    Making a thread for this because there are very few post-viral/post-infectious conditions where the pathophysiology remains enigmatic and because there are intriguing parallels with ME/CFS. In headache-specialist neurology clinics the diagnosis of NDPH (new daily persistent headache) is...
  20. Nightsong

    Has there ever been any evidence that health professionals are more represented among ME patients?

    A long time ago I chased down some of the references in SW's papers - in his infamous "Old wine in new bottles" paper, he references the preface to Dr Anne Macintyre's book "M.E. / Post-Viral Fatigue Syndrome, How to live with it", written by Prof. E.J. Field, in support for this supposed...
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