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  1. Yann04

    What would a good questionnaire for diagnosing PEM look like?

    For reference here is the depaul questionnaire:
  2. Yann04

    What would a good questionnaire for diagnosing PEM look like?

    The most popular questionnaire for PEM is the De-Paul Symptom Questionnaire, which, to be frank, is not the best, as it mostly focuses on fatigue after exertion and seems to flag an unlikely proportion of people with other illnesses having PEM. It seems there isn’t much competition. The FUNCAP...
  3. Yann04

    Endometriosis in later life: an intersectional analysis from the perspective of epistemic injustice, 2024, Langmann et al

    Abstract: Endometriosis, a chronic inflammatory condition affecting 10% of biological women, is widely understudied and particularly overlooked in later life. Discussions surrounding endometriosis predominantly centre on medical gender bias during reproductive years, with limited attention to...
  4. Yann04

    Impacts of the 2024 change in US government on ME/CFS and Long Covid

    The Hill RFK Jr.’s nomination gathers steam after Senate meetings GOP senators seem to be embracing the potential for Robert F. Kennedy Jr. to lead the Department of Health and Human Services, despite his controversial views on vaccines and pro-abortion record. Kennedy was initially thought...
  5. Yann04

    Review Microbial involvement in myalgic encephalomyelitis/chronic fatigue syndrome pathophysiology, 2024, Borrego-Ruiz et al

    Do we have any evidence for that? Some pwME have specific intolerances but it is unknown if that is part of ME. and it may be correlated with severity, who knows about cause and effect.
  6. Yann04

    Hair loss and changes to fingernails

    Thanks @Trish Annoyingly, I am well enough to have blood tests once in a blue moon, but I am not well enough to have blood tests at 8am. I “sleep” from 11pm—1pm and anything much shorter than that leads to significant PEM. Unfortunately the nursing service in my area only does blood tests at...
  7. Yann04

    Hair loss and changes to fingernails

    I think I’m developing hair loss and I think it’s due to ME. (I’m only 20 and there isn’t much history of significant hair loss in my family). (my hairline used to be straight in the corners and now it forms a sort of inward circle) I guess in general me being very severe was bound to have...
  8. Yann04

    Relaxing music for sleep

    If you don’t mind cloud rap, Sundance by Népal was one of my favourite soothing songs to play before sleep until I lost ability to listen to music due to severity.
  9. Yann04

    Preprint Safety, tolerability and clinical effects of BC007 on fatigue and quality of life in patients with post-COVID syndrome (reCOVer)..,2024,Hohberger +

    Were sequence A and B randomly selected? If so is the difference in response low enough to be due to noise?
  10. Yann04

    Marcia Doherty - severe ME/CFS patient

    Yes. I was enchanted by a privileged position in society until getting severe ME led to a crumbling house of cards and disenchantment. The more I learn, the more the case of ME doesn’t seem particularly rare, systemic injustices are common, they just aren’t very well known.
  11. Yann04

    Aripiprazole as protector against COVID-19 mortality Munecas et al 2024

    Wouldn’t anti-inflammatoiry properties would be expected to be linked to worse COVID outcomes because inflammation is part of how the immune system fights COVID? I guess anti-inflammatory properties would help with cytokine storms which may be linked to worse COVID outcomes.
  12. Yann04

    Personality and neuropsychiatric symptoms in individuals diagnosed with long COVID, 2024, Avinir et al.

    This kind of stuff was deeply engrained in the eugenics movement. Through spurious correlations (that mainly can be explained by socioeconomic factors) they painted marignalised ethnicities, poor people, queer people as “inherently inferior”, for example by using IQ questionnaires.
  13. Yann04

    BPS/Psychosomatic Theories and Sexism, discussion thread

    I found this particularly interesting. And this led me to wonder if there was any link between psychosomatics and eugenics/facism. The reality seems to be really complicated. Here’s my “mini lecture”/ notes I took. Please note these are my notes and sometimes my theories, don’t take unsourced...
  14. Yann04

    Aripiprazole - Abilify

    We’re talking about 50% of people on the apiprazole facebook group saying the had a short term improvement which eventually led to long term worsening. This isn’t a small proportion.
  15. Yann04

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    I don’t have the energy to follow but thank you for doing these literature searches @forestglip it is so important.
  16. Yann04

    Five-factor personality traits and functional somatic disorder: A systematic review and meta-analysis 2025 Lamm et al

    It’s hard to not see this personality “research” as similar ableist pseudoscience to what the differences based of race (leading to false claims of white genes being “better”) was during the eugenics movement. A poorely conducted excuse for research that gets funding and attention because it...
  17. Yann04

    Five-factor personality traits and functional somatic disorder: A systematic review and meta-analysis 2025 Lamm et al

    The only way this “research” is valuable is seeing how systemic denial of illness, mistreatment by the medical system, and having a disabling chronic illness might affect someone’s personality. Like yeah sure. I did go from a smiling extrovert to a frowning introvert, but the causality this...
  18. Yann04

    On how to test more drugs, 2024, Teslo & Chertman

    I do remember making a week’s worth of minimum wage salary and getting an all paid fine dining lunch in a single day by being a “medical model” for demonstration of some sort of new imaging technology at a conference a couple years ago. Weird experience, money was good thouh.
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