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  1. ME/CFS Science Blog

    Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al

    Looks very useful to me. The supplementary material includes the full questionnaire. It consists 55 concrete questions about activities where you can give 7 different scores, depending on how impactful it would be for you (thus including PEM). It always frustrates me that many functional...
  2. ME/CFS Science Blog

    Nature communications: Predictors of the post-COVID condition following mild SARS-CoV-2 infection, 2023, B-A. Reme et al

    Strange that only 0.4% of their sample developed Long Covid. Many patients might have been overlooked by the healthcare system or remained undiagnosed.
  3. ME/CFS Science Blog

    Opinion How methodological pitfalls have created widespread misunderstanding about long COVID, 2023, Høeg, Ladhani, Prasad

    It seems that the last author published 78 papers in 2022, or about 1 every 5 days. Does not give much confidence that he has methodology at heart when writing articles like this one. Papers — Vinay Prasad MD, MPH (vinayakkprasad.com)
  4. ME/CFS Science Blog

    Opinion How methodological pitfalls have created widespread misunderstanding about long COVID, 2023, Høeg, Ladhani, Prasad

    The authors also write about another study in 12-16 year olds: Specifically they found 9% of antibody-positive children had at least one symptom after 4 weeks compared with 10% of those without antibodies.25 But reference 25 points to Antonelli M, Pujol JC, Spector TD, et al. Risk of long...
  5. ME/CFS Science Blog

    Opinion How methodological pitfalls have created widespread misunderstanding about long COVID, 2023, Høeg, Ladhani, Prasad

    Also strange that they don't cite the Lifelines study (Ballering et al. 2022) which found: In 12·7% of patients, these symptoms could be attributed to COVID-19, as 381 (21·4%) of 1782 COVID-19-positive participants versus 361 (8·7%) of 4130 COVID-19-negative controls had at least one of these...
  6. ME/CFS Science Blog

    Opinion How methodological pitfalls have created widespread misunderstanding about long COVID, 2023, Høeg, Ladhani, Prasad

    Yes that already indicates that this paper isn't about increasing quality standards. The paper by Matta et al. is probably more flawed than whatever they are criticising here. That's quite unfortunate because I do have been disappointed in how poorly Long Covid has been studied by the...
  7. ME/CFS Science Blog

    Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

    Frustrating article. The journalist doesn't seem to do any attempt to figure out what is going on or what the truth is. They just quote the researchers and then a short response by a patient/advocate who doesn't agree. It doesn't give readers any background or insight. A good journalist would...
  8. ME/CFS Science Blog

    Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

    Hope someone will submit a commentary or rebuttal. I will not, but wanted to share my initial notes and comments in case these are useful for others to write their comment. The Oslo Chronic Fatigue Consortium claims to provide an “alternative view” and a “new perspective” on chronic fatigue...
  9. ME/CFS Science Blog

    Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

    Thanks. But it seems that the conference does not include anyone who currently has ME/CFS or who is a representative of a ME/CFS patient organisation?
  10. ME/CFS Science Blog

    Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

    These statements are also quite remarkable: "Persistent fatigue also occurs in many other illnesses [7,10–12] and is therefore unlikely to indicate a distinct illness with specific pathology." "The experience of pain, for example, can arise from expectations based on prior experience, without...
  11. ME/CFS Science Blog

    Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

    They also write: "By contrast, the approach often recommended by the public narrative of inactivity, isolation, and sensory deprivation, risks worsening symptoms and associated disability." I wonder who they think is recommending isolation and sensory deprivation. These are not viewed as...
  12. ME/CFS Science Blog

    Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

    They write (my bolding): "As a Consortium of researchers, academics, and clinicians interested in the causes and treatments of fatigue and fatigue related conditions, as well as representatives of patients who have suffered from these illnesses themselves, we propose that a different narrative...
  13. ME/CFS Science Blog

    Lightning Process study in Norway - Given Ethics Approval February 2022

    Interesting that they state it is 'necessary'. It feels that they are one step away from admitting they are measuring placebo effects.
  14. ME/CFS Science Blog

    Trial Report Physical exercise as a treatment for persisting symptoms post-COVID infection: review of ongoing studies and prospective randomized controlled trainin

    Yes interesting that they (think they) found differences in objective findings from exercise testing but for questionnaires, quite the opposite of ME/CFS trials. They used the Multidimensional Fatigue Inventory-20, the McGill Quality of Life Questionnaire (MQOL), and the Post-COVID-19...
  15. ME/CFS Science Blog

    Trial Report Physical exercise as a treatment for persisting symptoms post-COVID infection: review of ongoing studies and prospective randomized controlled trainin

    Don't quite understand why the group effects in table 3 show no significant differences, while the text says: "A group effect was found for VO2peak (p<0.01) and oxygen pulse (p<0.05) between exercise and control, respectively." I also don't think they corrected for multiple comparisons or...
  16. ME/CFS Science Blog

    Mestinon

    I had a brief look at randomized controlled trials on Mestinon (Pyridostigmine) to treat orthostatic intolerance. I found one on orthostatic hypotension, orthostatic tachycardia and one on exercise intolerance in ME/CFS (the recent trial by Systrom and colleagues). All three reported positive...
  17. ME/CFS Science Blog

    Ketones

    Ketones are a type of chemical that your liver produces when it breaks down fats. Your body uses ketones for energy typically during fasting, long periods of exercise, or when you don't have as many carbohydrates. A lot of pro cyclists are taking ketones (it is not on the doping list .... yet)...
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