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  1. ME/CFS Science Blog

    A charter to improve ME/CFS research

    Was not the intention. In that case, I would have focused more on things like objective outcomes and bias due to lack of blinding. It's mostly inspired by developments in the field of psychology following the "replication crisis". In some way, one could argue that clinical trials are one step...
  2. ME/CFS Science Blog

    A charter to improve ME/CFS research

    Some may think that I've missed the main issues in ME/CFS research but I've deliberately focused as little as possible on specifics because these depend on the particular study in question and it is ultimately the researchers who decide how to tackle a scientific problem. Most of the...
  3. ME/CFS Science Blog

    A charter to improve ME/CFS research

    Another suggestion: Use adequate controls It is recommended to not only use healthy controls but patients with other chronic illnesses. Otherwise, it is difficult to determine if reported differences are due to being ill or due to having ME/CFS.
  4. ME/CFS Science Blog

    A charter to improve ME/CFS research

    I recently followed an online webinar about patient involvement in the Dutch ME/CFS program. It looks like the idea is to involve patients in as many aspects of the research project as possible, which is a great initiative. If I recall correctly, ME/CFS patients were already involved in...
  5. ME/CFS Science Blog

    WHO: A clinical case definition of post COVID-19 condition by a Delphi consensus

    Further thoughts: I suspect that unexplained symptoms such as fatigue, shortness of breath, and cognitive dysfunction lasting longer than 2 months are quite common in the general population at any given time and that these symptoms may turn out to have multiple causes. Similarly, in the...
  6. ME/CFS Science Blog

    WHO: A clinical case definition of post COVID-19 condition by a Delphi consensus

    Here's the definition: I think it is rather vague (much like many ME/CFS criteria). You don't need a confirmed SARS-CoV-2 infection, symptoms only have to last for 2 months. Only vague symptoms such as fatigue, or shortness of breath are highlighted. And these symptoms can be of new-onset...
  7. ME/CFS Science Blog

    Case series of Pervasive Refusal Syndrome presenting with CFS: avoiding the pitfall of a wrong diagnosis, 2014, Herberholz, Crawley et al

    Thanks for posting. From this poster, it does look like patients with a more severe form of ME/CFS were rediagnosed with PRS by this group.
  8. ME/CFS Science Blog

    Neurochemical abnormalities in chronic fatigue syndrome: a pilot magnetic resonance spectroscopy study at 7 Tesla, 2021, Godlewska et al

    The authors write: So this could have been rather interesting. Unfortunately, these authors from Oxford University used the Fukuda criteria (10/22 patients were taking antidepressants) and they focused on a brain region (the pregenual ACC) because of their previous work on depression. They...
  9. ME/CFS Science Blog

    Functional neurological disorder: lighting the way to a new paradigm for medicine, 2021, Edwards

    There is something weird about how the word "rehabilitation" is being used. As if it is not a medical intervention like others and that needs to be tested to see if it works or not. Rehabilitation seem to work by definition. The only limitation is that it cannot be done to patients. It...
  10. ME/CFS Science Blog

    Central sensitisation in chronic fatigue syndrome and fibromyalgia; a case control study, 2021, Bourke, White et al

    Yes, I wonder if people who are chronically ill might simply be more prone to report symptoms or findings (because they hope it will help their doctors or scientific research). Would be interesting to include a control group with an illness where pain is not a prominent symptom.
  11. ME/CFS Science Blog

    Central sensitisation in chronic fatigue syndrome and fibromyalgia; a case control study, 2021, Bourke, White et al

    Quote from the study: "Statement of funding The study was funded by project grants from Barts Charity (470/ 1700), the CFS Research Foundation and Action for ME."
  12. ME/CFS Science Blog

    Incidence, co-occurrence & evolution of long-COVID features: A 6-month retrospective cohort study of 273,618 survivors of COVID-19, 2021, Taquet et al

    Interesting study. Although the prevalence of long-covid related symptoms was higher in the group that had a coronavirus infection compared to the influenza group, I was surprised the percentage was actually quite low for fatigue (ca. 6%) and cognitive symptoms (ca. 4%)
  13. ME/CFS Science Blog

    Placebo effect: a psychosomatic component, or only an aggregate of other biases?

    I do wonder how this keeps happening. Do so many researchers not understand basic clinical trial methodology, like the need for a control group and the risk of response bias? I find this hard to believe because this is as basic as it gets. So it must be that the idea of a "powerful placebo"...
  14. ME/CFS Science Blog

    Placebo effect: a psychosomatic component, or only an aggregate of other biases?

    Just had a look at these reviews and it is really astonishing that these were published in prestigious journals. The one in NEJM seems like an opinion piece. It doesn't provide data or systematic review. It cites the literature selectively and sometimes incorrectly. I note that the senior...
  15. ME/CFS Science Blog

    Placebo effect: a psychosomatic component, or only an aggregate of other biases?

    How frustrating to see this is still going on. I think it goes back to the very first randomized clinical trials after the second world war. Some people were surprised by how much the control group improved in those studies as they didn't receive active treatment, so they said it was due to a...
  16. ME/CFS Science Blog

    Complement Component C1q as a Potential Diagnostic Tool for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Subtyping, 2021, Castro-Marrero et al

    This Belgian study reported changes in complement C4 after exercise in ME/CFS patients but not in healthy controls Exercise-induce hyperalgesia, complement system and elastase activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - a secondary analysis of experimental comparative...
  17. ME/CFS Science Blog

    The Presentation of ME/CFS Is Not Influenced by the Presence or Absence of Joint Hypermobility, 2021, Vogel, Rowe et al

    I was thinking that even if JH was more prevalent in ME/CFS patients than controls, it still might not mean that it is a risk factor (which to me suggests evidence from longitudinal studies). Is JH something that is set at birth or can it be influenced?
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