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  1. Kitty

    How to report findings that sick people are more sick

    I forgot to answer the question as usual. I think when representing findings like this, there has to be acknowledgement of a tipping point. Work is good for health in many ways. But there comes a point where a person's level of impairment means the balance shifts, and instead of being...
  2. Kitty

    How to report findings that sick people are more sick

    In this instance, I can't decide whether the study is trying to suggest that people should be encouraged to exercise more. It might be doing that. Alternatively, it might be reporting that fatigue is an additional impairment that these patients have to deal with, on top of their other MS...
  3. Kitty

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Well, he's been spotted prowling outside. Hopefully the locks will hold. I might replace "reprehensible" with "slightly tragic attention-seeking" though.
  4. Kitty

    Evidence of a Novel Mitochondrial Signature in Systemic Sclerosis Patients with Chronic Fatigue Syndrome 2023,van Eeden et al

    In the absence of a marker, what we mainly lack is an adequate screening tool for PEM. A questionnaire that doesn't lead patients too much, perhaps along the lines of the HADS scale (which I think uses techniques such as asking the same question in different ways). In most cases PEM ought to be...
  5. Kitty

    Effects of Nature-Based Multisensory Stimulation on Pain Mechanisms in Women with Fibromyalgia… 2023, Gungormus, et al

    Yes, they couldn't write "Women with fibromyalgia", because nobody would be surprised.
  6. Kitty

    A new consensus? - ME/CFS skeptic blog

    PS: To contradict to my own earlier post slightly, longer follow-up times might be less reliable in recently diagnosed people because of adaptation. Two or three years after diagnosis with erosive arthritis my function had improved even though my impairment was worse, because I'd re-learned how...
  7. Kitty

    A new consensus? - ME/CFS skeptic blog

    I agree about not using these measures on their own, but the reliability of subjective outcomes could be improved by, as @Hutan says, following triallists for long enough. Outcomes at 18 to 24 months ought to be much reliable than at two or three; if a treatment has improved symptoms, patients...
  8. Kitty

    Basic questions on terms and methodology used in clinical trials

    From @MSEsperanza: Further to the question about the term "outcome assessor" discussed above (starting here: https://www.s4me.info/threads/basic-questions-on-terms-and-methodology-used-in-clinical-trials.30316/#post-445244 ) Quote from the Cochrane Handbook: 3. Who is the outcome assessor...
  9. Kitty

    Preprint Comparison of T-cell Receptor Diversity of people with Myalgic Encephalomyelitis versus controls, 2023, Dibble, Ponting et al

    There's only one difference between the pain I get from eating sugary food* and the pain I get from PEM. The former doesn't require overexertion, starts shortly after eating, and tails off after three hours. The latter does require overexertion, is delayed, and lasts days. The same burning...
  10. Kitty

    Whitney Dafoe Updates

    Oh, that's horrible news. It's about time we had this sorted, no one should have to live like that. :(
  11. Kitty

    UK: Invest in ME Conference 2023

    There also has to be a discipline in online sessions (only one person speaking) that's completely different to what happens in conference breaks. People coalesce into small conversation groups, and they also overhear snippets of the other conversations going on around them. It's not unusual for...
  12. Kitty

    Rates of Prolonged Grief Disorder: Considering relationship to the person who died and cause of death, 2023, Thieleman et al

    I wonder if it ever occurs to these researchers that they'd be a lot more use to society if they went to the pub instead?
  13. Kitty

    David Systrom, researcher, Brigham and Women's Hospital, USA

    That's the interesting one, isn't it. Utility and reliability of a test, and wider acceptance of it, are different things. It's notable how often clinicians working with contested diagnoses are accused of dubious inventions that in another context would be called scientific advances.
  14. Kitty

    Clinical support and encouragement versus manipulation (includes motivational interviewing)

    No, it can never be that. It's reasonable to explore whether there might be explanations for the behaviour, it's reasonable to offer advice, information, and encouragement, it's reasonable to ask whether the patient would like support or would prefer to revisit it at a different time. But if...
  15. Kitty

    Clinical support and encouragement versus manipulation (includes motivational interviewing)

    So in the motivational interview, the patient compassionately and empathetically helps the professional to explore, understand, and accept the problems that are holding them back from doing their job. Do they say what the pay rate is?
  16. Kitty

    Myopathy as a cause of Long COVID fatigue: Evidence from quantitative and single fiber EMG and muscle histopathology, April 2023, Hejbøl et al

    I guess it'd be a lot clearer if they weren't present in samples from a control group processed at the same time. Haven't the energy to read the article properly, so I'm not sure whether they did this.
  17. Kitty

    Questionnaires that can differentiate depression from chronic symptoms

    I've been asked to do the HADS numerous times, and it's only just struck me that I've always based my responses on the assumption I had the energy to enjoy things (which I do for some of the time). But that might be because I recognised it as a depression scale, and I know depression's not...
  18. Kitty

    Let's talk wheelchairs and mobility scooters

    I'm glad you got to try it, @Shadrach Loom, and I hope it hasn't floored you for too long. Scooters aren't great for pwME, are they. There's nothing to support your arms and you torso, or stop your legs from flopping about, so you burn through a lot of energy really quickly. I've used Trampers...
  19. Kitty

    Professor Gerd Kvale on Long Covid

    It'll be drive-thru CBT next.
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