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  1. Hoopoe

    Norway: Opinion piece on "Facts and myths about ME" by Reme, Flottorp and Wyller

    Vogt is either strawmanning or demonstrating his lack of familiarity with basic concepts such as systematic bias.
  2. Hoopoe

    BBC Radio 4 -What does a mysterious school illness tell us about our anxieties?

    This seems entirely consistent with how a toxin or pathogen would spread. People who know each other would be more likely to spend time together and visiting places where they can be exposed to the pathogen or toxin. Awareness of a problem would also spread more easily between people that know...
  3. Hoopoe

    Pathophysiology of eosinophilic esophagitis: recent advances and their clinical implications

    I found this review interesting and some of the discussion could be relevant to the ME/CFS disease process. The popularity of elimination diets in ME/CFS suggests that it would be good to look for the reasons behind this. I wonder if the inability to tolerate eating in severe ME/CFS could be...
  4. Hoopoe

    Discovering strengths in patients with medically unexplained symptoms – a focus group study with general practitioners 2022 Jøssang et al

    I noticed no one ever asks the patients with MUS what they want in an open-ended manner that allows all responses to come through. Also I wonder when the MUS theorists will grasp that the symptoms are the reality of illness or combination of illnesses and that any discrepancy between model and...
  5. Hoopoe

    ME/CFS Epidemiology - sex ratios, female predominance

    The way it felt for me as male adolescent with (maybe) ME/CFS was that I wasn't allowed to be ill. There was a lot of pressure to go to school and my symptoms were reinterpreted to fit the belief system of the adults. I was not considered a credible witness to my own condition (and indeed, I was...
  6. Hoopoe

    Suppose you have €5-10 million for ME/CFS research, what would you spend it on?

    I'm curious what a study would find that counted rare variants in genes that could be relevant to ME/CFS. The genes where patients in comparison to controls have a larger number of rare variants could be the ones that are causally involved. The genes could be selected by using the existing...
  7. Hoopoe

    Suppose you have €5-10 million for ME/CFS research, what would you spend it on?

    I think we need studies using methods that have so far not been applied or only to a very limited degree. There is a lack of tissue studies. Post-mortem studies (not just of the brain), muscle biopsies, skin biopsies, growing cells from patient skin and seeing if they're abnormal and stuff like...
  8. Hoopoe

    Options for genetic testing

    Your intuition is not correct. Animal models of specific genetic defects can confirm the relationship between the mutation and the disease observed in humans. I've read many papers where such findings were described. I share your concern over the well being of animals. Animal here can just mean...
  9. Hoopoe

    Options for genetic testing

    I had my genome sequenced and am still in the process of trying to interpret the resulting mass of information. It's possible that actionable information will come out but obtaining it is hard work. A typical person has between 4 and 5 million variants in their genome. The effect of most of...
  10. Hoopoe

    WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome, 2023 Hwang et al

    DOCKopathies: A systematic review of the clinical pathologies associated with human DOCK pathogenic variants The family of DOCK proteins are involved in intracellular signalling, including "Rho GTPases like RAC1, RHOA, WAVE/WASF1, and N‐WASP". Many of these pathways are involved in the...
  11. Hoopoe

    Can anyone give me a copy of this article?

    DOCKopathies: A systematic review of the clinical pathologies associated with human DOCK pathogenic variants https://onlinelibrary.wiley.com/doi/abs/10.1002/humu.24398 It was not on sci-hub when I checked yesterday.
  12. Hoopoe

    Norway: Article about ME seminar with security

    Sounds like they're preparing to publish a study that is crap and, following in the steps of their UK colleagues, are seeding the idea of dangerous activists to put critics at a disadvantage. Best response would be to publish an article where the critics precisely point out what is being done...
  13. Hoopoe

    A thread to talk about muscle biopsies

    I was contacted and told the preliminary results of the biopsy. It is clearly abnormal (in the words of the doctor) and there was a suspicion of myositis, which was subsequently ruled out. I'm now waiting for the full results.
  14. Hoopoe

    At what point could someone with ME have somatic symptom disorder?

    The problem is that there is a very thin line that separates genuinely excessive worry from normal levels of worrying that is judged excessive due to ignorance of what normal should be like in that particular situation or due not having a complete picture of the situation, or from an inability...
  15. Hoopoe

    Orthostatic hypotension and novel blood pressure-associated gene variants: Genetics of Postural Hemodynamics (GPH) Consortium, 2012

    One of the SNPs more strongly associated with orthostatic hypotension in this study is a gene that plays a role in B cells and is exploited by the Epstein-Barr virus. The mechanism by which this SNP causes orthostatic hypotension could be autoimmunity. The gene is also associated with lymphoma...
  16. Hoopoe

    Orthostatic hypotension and novel blood pressure-associated gene variants: Genetics of Postural Hemodynamics (GPH) Consortium, 2012

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3442958/
  17. Hoopoe

    Cognitive-communication difficulties in adults with Long COVID, 2023, Cummings (has ME/CFS control group)

    I speak slowly to hide the difficulty I have in constructing sentences at normal speed. In part this is word finding difficulties.
  18. Hoopoe

    Bioinformatics and systems biology approach to identify the pathogenetic link of Long COVID and ME/CFS, 2022, Lv et al

    I was curious what the data on genes in ME/CFS was like. One of the databases they used was disgenet.org. disgenet.org. reports an association with the FURIN gene. Unfortunately the database contains garbage. Just look at this https://www.disgenet.org/browser/0/1/1/C0015674/ Amusingly, the...
  19. Hoopoe

    Do people with ME/CFS and joint hypermobility represent a disease subgroup? An analysis using registry data, 2024, Kathleen Mudie et al

    I'm pretty sure there is something abnormal going on with the joints of a subgroup of patients but it's not showing up in controlled studies designed to detect an assocation between hypermobility and ME/CFS. That could mean it's a very small subgroup or that there is no association with ME/CFS...
  20. Hoopoe

    Letter to BMJ: "Medical gaslighting: to say that invoking psychological symptoms is equivalent to dismissal is reductionist", Michael Sharpe

    Isn't it strange how the people who reduce every problem to "wrong thoughts and behaviour" also mention "biomedical reductionism" a lot? Also, it's not a competition to produce the most complex or holistic hypothesis, but one to prove a hypothesis correct and find a working treatment.
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