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  1. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    But deconditioning is primarily about fitness and is measured by aerobic capacity, specifically by CPET - and the study demonstrated deconditioning. It would be odd if a group of people with ME were not. Grip strength and muscle mass are measures more of strength than fitness. The problem for...
  2. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    I'm not sure if there is a logical flaw. I believe they are saying is that effort preference is a brain-related issue, not a muscle-deconditioning one. Whether or not effort preference is a meaningful concept is another matter. But I'm still trying to wrap my mind around the whole effort...
  3. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Astonishing. Again: why does this not happen in every other limiting illness? And ME-like syndrome would be the norm if this were true. More pertinently, they collected no evidence that allowed them to plausibly speculate along these lines. What they could easily have done is asked their...
  4. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Frustratingly, supplementary data table S7 gives group scores for PROMS, though only the aggregate Physical and Mental components from the SF36.: HV (n=21) HV (n=21) PI-ME/CFS (n=17) PI-ME/CFS (n=17) Mean , SD p-value (Mann-Whitney U) SF-36 Physical Component Score HV: 56.7, 3.1 | ME/CFS...
  5. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Surely the arrows are better placed like this. (Yellow arrows added) Or maybe their final image should be at the start as leading to everything else and the Reduced Activity is the final Outcome Yes, it's the assumed causality that troubles me, and the implicit failure to listen to patients...
  6. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    First, the stats suggest many of the findings are iffy (though of course there is the problem of teeny sample size meaning true effects will be missed). But if we accept them as real signals, are they specific to ME or a generic chronic illness signal, particularly a chronic exhausting/PEM...
  7. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    I hadn’t notice that: this is classic “ME is the result of deconditioning“. it shows the authors haven’t grasped the importance of post-exertional malaise. ADDED Or put another way, why doesn't every other limiting condition cause a syndrome similar to ME, complete with PEM. Why doesn't MS have...
  8. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Thanks. I guess regardless of its purpose, the battery of testing is also likely to be more challenging for PwME than for healthy volunteers, which might well add to the stress. So the autonomic functioning element looks a miss and physical conditioning probably applies to most chronic illnesses...
  9. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Autonomic dysfunction in ME/CFS Tilt table testing found no POTS or OI differences with controls. However, they also found reduced baroslope, which I think means that regulation of blood pressure when it changes is slower than optimal. A wearable 24-hour ECG showed reduced heart rate...
  10. Simon M

    Blood–brain barrier disruption and sustained systemic inflammation in individuals with long COVID-associated cognitive impairment, 2024, Greene et al

    "exposure of brain endothelial cells to serum from patients with long COVID induced expression of inflammatory marker" Interesting, though I couldn't see the relevant figure (happy to look if someone points me to it).
  11. Simon M

    Grip test results and brain imaging in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Going back to the idea of effort preference, are the reported differences trustworthy? I've not read the paper yet (it's ***ing huge), but these criticisms look significant: @chillier was commenting on the fMRI data of participants doing repeated hand-grip tests, and pointing out that the...
  12. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Credible mechanism for how 'effort preference' issues could explain PEM & relapses? I queried how simply pushing overriding 'effort preference' could explain both PEM and relapses, where it seems (particularly for relapses) our body behaves as it is broken (e.g. legs giving way), as opposed to...
  13. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    For this to be credible, we need an explanation for PEM and relapses. If our body was fine and the problem is with effort preference (or even central perception), why if we choose to do stuff regardless: 1. We get PEM - is that then purely a brain phenomenon (this is possible)? 2. We get...
  14. Simon M

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    A muted response from Chris to Science Media Centre Prof Chris Ponting, Chair of Medical Bioinformatics, University of Edinburgh, said: “This long-awaited publication describes results from an exploratory study of 17 people with post-infection ME/CFS who match by age, sex and body mass index...
  15. Simon M

    Clinical effectiveness of an online group physical & mental health rehab programme for post-covid-19 condition REGAIN study, 2024, McGregor+

    A rather poor New Scientist piece: https://www.newscientist.com/article/2416283-exercise-programme-helps-people-with-long-covid-but-its-no-panacea/ Concluding On the other hand, it is the first time a randomised trial – the best medical evidence – has shown anything to have even a modest...
  16. Simon M

    Trial Report Can a consensus occur on a research case definition for ME/CFS?, 2024, Jason

    If we look at MS - a widely used comparator to ME - about half of people with MS report sleep problems. In other words, lots of people have MS without having sleep problems, so it would not be a good mandatory symptom for MS. DecodeME did not require any specific case definition to be met -...
  17. Simon M

    Trial Report Can a consensus occur on a research case definition for ME/CFS?, 2024, Jason

    That's a good point and a great idea. It also shouldn't be too hard to do. Ideally looking at prevalence in both healthy and sick comparisons.
  18. Simon M

    Trial Report Can a consensus occur on a research case definition for ME/CFS?, 2024, Jason

    Yes, the comparison with other illnesses would be very interesting. However - 1. Clinicians who came up with these definitions are presumably familiar with other chronic illnesses, yet still felt NRS stood out for ME. 2. The initial DecodeME study found NRS was reported by almost all of the...
  19. Simon M

    Trial Report Can a consensus occur on a research case definition for ME/CFS?, 2024, Jason

    Which aligns very closely with the Institute of Medicine case definition (I think the only difference is that this allows orthostatic issues in place of cognitive ones). For reasons I never understood, Lenny Jason vociferously opposed this. Which might be why the abstract talks up the ICC and...
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