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  1. Mij

    £622,000 grant to improve diagnosis and treatment for ME/CFS and Long Covid

    Moved post OXFORD, BRISTOL, EDINBURGH, UK – 15 December 2023 – Leading computational biology company PrecisionLife®, which is driving precision medicine in complex chronic diseases, the ME/CFS charity Action for M.E., and the MRC Human Genetics Unit at the Institute of Genetics and Cancer...
  2. Simon M

    Patients with [CFS] performed worse than controls in a controlled repeated exercise study despite normal oxidative phosphorylation, 2010, Vermeulen +

    The huge appeal of defects in energy metabolism playing central role is that they can explain the mental as well as the physical fatigue. But they all seem to have the same problem that they can’t explain why a single maximal exercise test produces normal results compared with sedentary...
  3. Simon M

    CDC Data Brief: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022, 2023, Vahratian, Unger et al

    I agree that it would be great to cross check the answer to the question about being diagnosed with ME/CFS against other data. I don’t know if they have links to respondents‘ health records of permission to access them. As you say, that could improve the question used and the interpretation of...
  4. Simon M

    Dysregulation of the Kynurenine Pathway, Cytokine Expression Pattern, and Proteomics Profile Link to Symptomology in ME/CFS 2023, Kavyani et al

    That is the key question, especially as so much of this paper is speculation, often about weak findings. Yet some of the differences in KP metabolites or their ratios are striking. I now feel better about how much I have been struggling with the biology! I will focus on the key findings and...
  5. Simon M

    CDC Data Brief: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022, 2023, Vahratian, Unger et al

    What is the true prevalence rate for MEcfs? I agree this prevalence figure will help advocacy, especially in the US. It's a very large (57k), nationally representative study from the CDC and the CDC has put its name to a high prevalence rate for ME/CFS. This will be a real asset for advocacy...
  6. Simon M

    CDC Data Brief: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022, 2023, Vahratian, Unger et al

    A 1.3% prevalence is 1 in 80 people having a diagnosis. I had always been told that diagnosis was very hard to get in the US. Excluding those we met through this illness, do 1 in 80 people we knew have a diagnosis of ME - maybe 1 in 40 actually having it? I know Charles Shepherd of the MEA...
  7. Simon M

    CDC Data Brief: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022, 2023, Vahratian, Unger et al

    Massive, representative survey - but red flags too This is a massive, nationally representative survey, which makes this very interesting: There is a lot to go through here, but I am concerned by some mismatches with other data sources and evidence 1. 1.3% is way higher than the Lenny Jason...
  8. Simon M

    Dysregulation of the Kynurenine Pathway, Cytokine Expression Pattern, and Proteomics Profile Link to Symptomology in ME/CFS 2023, Kavyani et al

    Edited. The abstract doesn't provide any numbers, such as cohort size or results data, so it's impossible to judge if it is worth trying to access a paywalled copy: I thought there were guidelines for writing abstracts - though I think the strongest ones are for clinical trials (CONSORT).
  9. Simon M

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Blue Sky version (shorter and better): https://bsky.app/profile/simonmcg.bsky.social/post/3kdu36ufjbm2n
  10. Simon M

    Genetic Risk Factors for Severe and Fatigue Dominant Long COVID and Commonalities with ME/CFS Identified by Combinatorial Analysis, 2023, Taylor et al

    This is from the same team at PecisionLife that used the same approach in their ME/CFS paper last year (thread, my blog). They are using small cohorts, even allowing for the power of their combinatorial analysis. First, they defined Long Covid cases based on symptoms at 3 months (which is...
  11. Simon M

    The nanoneedle salt stress test – too good a clue to leave abandoned on the lab bench?

    More from the MEA Added: note that both groups (biomedical engineering at Sarah University, and Cure ME) have previously found differences in the electrical properties of blood between people with ME. and healthy controls/those with MS. Presumably, this is unpublished data. They...
  12. Simon M

    Survey: "TREAT ME" (ME/CFS & Long Covid Treatment Survey), by 'LongCovidPharmD'

    Can you give an example of this? I haven’t seen any good surveys by health providers
  13. Simon M

    Survey: "TREAT ME" (ME/CFS & Long Covid Treatment Survey), by 'LongCovidPharmD'

    I think this is a very helpful approach, given that it aims a starting point rather than provide definitive Also, it would be interesting to see the comparison between survey results for different proposed treatments. It’s likely that the biases would be similar when the same person is...
  14. Simon M

    Predicting Myalgic Encephalomyelitis/Chronic Fatigue Syndrome from Early Symptoms of COVID-19 Infection , 2023, Hua et al

    How is that not a straightforward reason for the journal to reject the paper? Added: journal information Psych Psych is an international, peer-reviewed, open access journal on psychiatric sciences and psychology, published quarterly online by MDPI.
  15. Simon M

    Review The demographic features of fatigue in the general population worldwide: a systematic review and meta-analysis 2023 Yoon et al

    Chronic fatigue vs CFS and possible confusion between the two. The one potentially useful figure from this review is for the 9 studies (84.5k participants) of adults surveyed for both chronic fatigue (>6mo) and "CFS or CFS-like illnesses". (Note mostly questionnaire based of a general...
  16. Simon M

    Developing and validating a brief screening scale for ME/CFS, 2023, Jason et al

    I very much like the use of disease controls in this study. Historically, the problem with the dePaul symptom questionnaire was that the questions on PEM. couldn’t distinguish between PEM. and exertion intolerance (the latter is common in many illnesses,). However, I thought the current...
  17. Simon M

    Published poems by Veronica Ashenhurst, who has Severe ME

    Thank you, Veronica, for all the effort you put into crafting these fabulous poems. The Sestina to your mother issuch a beautiful exploration of the impact of illness on a carer as well as a patient and, even more, of your relationship with your mother, that evolved from it that it made me...
  18. Simon M

    Developing a blood cell-based diagnostic test for ME/CFS using peripheral blood mononuclear cells, 2023, Xu, Morten et al

    This is brilliant work. I’ve always wondered how a random data comparison would look for many different ME studies. clearly, not very good in this case.
  19. Simon M

    Pediatric and Adult Patients with ME/CFS following COVID-19: A Structured Approach to Diagnosis Using the MBSQ, 2023, Peo et al.

    @Andy posted some interesting data from a Lenny Jason, study about length of PEM (the dePaul symptom questionnaires questions on this are more about exertional intolerance). IIRC, the data clustered into two groups, a shorter duration of less than 14 hours, and a longer duration of more than...
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