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  1. Jonathan Edwards

    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    I think the two problems with the CPET findings is that 1) they are not consistent across the patients - different patients show different patterns, even if mean values for the group are different. 2) Although findings do not seem to be attributable simply to inactivity they may nevertheless...
  2. Jonathan Edwards

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    I agree that if specific findings can be replicated in a population with tighter diagnostic ascertainment they may be a great importance. And if they can be linked to DecodeME findings in terms of genes all the better. My worry about the sample size is that the bigger your sample the more...
  3. Jonathan Edwards

    Movement Disorders in Brain Sagging Syndrome Due To Spontaneous Intracranial Hypotension: A Review, 2024, Abhishek Lenka et al

    Why would intracranial hypotension lead to brain sagging? Unless there are actually bubbles of nitrogen collecting above the brain I cannot see any reason why it should sag. If anything it should be sucked upwards I think. I also think it pretty unlikely that brain sagging should give rise to...
  4. Jonathan Edwards

    2024 Stanford MECFS meeting

    Different findings in different laboratories only suggest subgroups if those findings are incompatible with each other in terms of mechanism. I am not sure I have seen any such incompatibility. And the most likely reason for different labs finding different things that are incompatible is that...
  5. Jonathan Edwards

    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    Maybe one simple way to put the point is that if a test T is found reliably to show up in a reasonable proportion of people with ME/CFS it will be a sort of 'diagnostic test' but a diagnostic test for type T ME/CFS and whether or not 95% of people with ME/CFS have it doesn't matter. Further...
  6. Jonathan Edwards

    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    Yes, but you have to factor into this the fact that human beings think they know how they are making decisions but very often get that wrong. Doctors are a prime example. There was a very nice paper in the 1980s by John Kirwan that showed that rheumatologists do not actually make decisions the...
  7. Jonathan Edwards

    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    But that's the point. We need a test that shows that 'something's wrong', not a test for ME/CFS, which is merely a placeholder term we use at the moment because we have no real idea which patients have the same thing wrong and which have some other thing wrong. Any test that tells us that...
  8. Jonathan Edwards

    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    This is a pervasive myth. I worked on rheumatoid arthritis for 35 years and we made huge progress - enough to keep almost all patients well all the time. But there is no diagnostic test for rheumatoid. GPs think there is and that is a huge problem because people with rheumatoid with negative...
  9. Jonathan Edwards

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    That's pretty unhelpful coverage I think. Ponting's study does not claim to provide any sort of diagnostic test. Moreover, diagnostic tests are not what we need. The comment shows a lack of understanding of the basic process of clinical decision-making. The point of such studies is to give us...
  10. Jonathan Edwards

    Identification of unique genomic signatures in patients with fibromyalgia and chronic pain 2024 Mohapatra et al

    Unless I am mistaken they don't even understand their own 'science'. The paper seems to be about gene expression in terms of RNA, not DNA genomic signatures, as fas as I can see. Nothing to do with DNA.
  11. Jonathan Edwards

    COVID-19 lockdown effects on adolescent brain structure suggest accelerated maturation that is more pronounced in females than males, 2024, Corrigan+

    I see the project was funded by Bezos. Maybe the effects were due to the dysfunctionality of the online world?
  12. Jonathan Edwards

    Preprint Divergent inflammatory and neurology-related plasma protein profiles in LC following primary and breakthrough infections., 2024, Bansal+

    To me the abstract is completely opaque. What diverged from what? The overall impression is that they didn't find much other than a few odd patterns with statistics I have never heard of. I prefer papers to present data rather than waffling about leveraging and rare opportunities.
  13. Jonathan Edwards

    Cerebrospinal fluid flow extends to peripheral nerves further unifying the nervous system, 2024, Alexander P. Ligocki et al

    Except that it is complete garbage. The first sentence is entirely incorrect. CSF does not supply the CNS with nutrients or remove waste. Blood vessels do that. The passage of 1.9 nanometer gold into peripheral nerve axoplasm tells us nothing about nutrition or waste removal in nerves (nothing...
  14. Jonathan Edwards

    Oslo Chronic Fatigue Network

    Well, at least they give the strong impression that nobody ever believed in what they have been saying for 50 years (their first paper is dated 1977). The PACE trial never existed. Odd to pretend you never existed.
  15. Jonathan Edwards

    ME/CFS Epidemiology - sex ratios, female predominance

    Trouble is, if I felt the way I do these days when I was forty I would be sure I had ME/CFS. But I am pretty sure it is just being over the hill and full of worn out joints, blunted nerves and wasting muscles. A diagnostic requirement of ME/CFS is that the symptoms are not explained by something...
  16. Jonathan Edwards

    [Blog] BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline

    Not in exactly the same systematic way with a group of a dozen people but yes, the process has been going full tilt in a slightly formats. The S4ME threads are often this type of conversation. Recent threads around @ME/CFS Skeptic's blogs come to mind, where everyone has picked apart ideas and...
  17. Jonathan Edwards

    Ancient disease from 3800 BC is making a comeback in children - scurvy

    It says scurvy can be traced back to Egypt 3800 BC (rather than 3800 years ago) which it can, by looking at the bone defects, just as we have traced forms of arthritis even in fossils millions of years old. I haven't read it all but I didn't see anything about them understanding about vitamin C...
  18. Jonathan Edwards

    Ancient disease from 3800 BC is making a comeback in children - scurvy

    The headline may be fair. 3800 BC may be the earliest documented case. That would be from bone damage, which is of a specific pattern in scurvy. Before 3800 BC most cultures may have been based on fresh foods and there aren't that many bones. Scurvy occurs when a diet is totally restricted to...
  19. Jonathan Edwards

    Ancient disease from 3800 BC is making a comeback in children - scurvy

    The bit quoted above seems fairly reasonable. There has always been a few cases of scurvy around, mostly in alcoholics and people who live in isolation with very restricted diets but it is quite likely that there are ore cases now.
  20. Jonathan Edwards

    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    If I remember rightly it appears in a scatterplot figure at bottom left suggesting low in both?
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