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  1. Nightsong

    Experiences and methods for observing, testing and tracking cognitive fatigueability and PEM - discussion thread

    You could measure all kinds of variables. Backspace use, yes, and inter-word as well as inter-keystroke timings (the time it takes to find a suitable word). Spelling & grammar error rates relative to a baseline. Mouse movement patterns. As for privacy - as long as you don't store the text on...
  2. Nightsong

    Experiences and methods for observing, testing and tracking cognitive fatigueability and PEM - discussion thread

    You could track how the user's speed, error rate etc changes over the course of working on the same task (document/web form/etc) - does it worsen over time, and by how much? Are they fatiguing quickly, or slowly? You could also try to do this a bit more intelligently by tracking the user's...
  3. Nightsong

    Experiences and methods for observing, testing and tracking cognitive fatigueability and PEM - discussion thread

    Here's another possibility: typing patterns. I'd bet that if I typed a paragraph or two and inter-keystroke timing was measured you'd get a correlation with how I was feeling on that particular day. (If you wanted to observe usual activity, rather than keep asking the user to type a sample...
  4. Nightsong

    Experiences and methods for observing, testing and tracking cognitive fatigueability and PEM - discussion thread

    Speech. Word-finding difficulties, errors or slowness in speech, more "er"s and pauses, and perhaps tangentiality or a lower level of coherency as well. I'm not sure if speech-to-text is good enough to measure the error rate here, yet, and I doubt there's an open-source system that will measure...
  5. Nightsong

    The “Permanent Worsening” Phenomenon

    "Psychosomatic misattribution can also result in the prescription of harmful therapies such as GET, which can induce potentially permanent worsening of symptoms due to PEM [89,90]." (Thoma et al, link) I don't have the energy to chase down references 89 and 90 at the moment, but perhaps a...
  6. Nightsong

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    The notion of sensory sensitivities as something that only applies to the bedbound is something I'd also challenge. I'm "severe" as defined by the NICE guideline, and I'd probably plump for level 4, being mostly housebound, but I've made lots of adaptations to accommodate sensory sensitivities...
  7. Nightsong

    Stories of mis-diagnoses in the media

    https://archive.is/tbVHx
  8. 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).
  9. 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)...
  10. 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.
  11. Nightsong

    An Update of a Theory

    From Psoriasis and pregnancy (J Cutan Med Surg. 2002 Nov-Dec;6(6):561-70)
  12. 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...
  13. 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
  14. 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...
  15. 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...
  16. 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...
  17. 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...
  18. 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...
  19. 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.
  20. 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'...
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