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  1. Yann04

    Poll: What is your most disabling symptom?

    I’m curious.
  2. Yann04

    Using deconditioned people as controls

    I would guess that biomarker is something unique to the disease that consistently differentiates between that disease and healthy people/people with other diseases. A biological abnormality might be more of an “abnormality” found on “average” in patients, ie. the average patient has a larger...
  3. Yann04

    Using deconditioned people as controls

    I don’t personally understand this well myself, but I think it’s important to distinguish between a biomarker and biological abnormalities. Because as far as I know we have consistent findings of a couple of biological abnormalities, such as in T-cells.
  4. Yann04

    Using deconditioned people as controls

    More research funding will surely get us more data that we crucially need. And the rise of statistical analysis using more sophisticated regression or other machine learning techniques will help find these kinds of abnormalities. However, as this thread discusses, I would be concerned such...
  5. Yann04

    Poll - Have You Ever Believed In Psychosomatic Illness?

    Out of curiosity, how close can you come to proving a physical symptom has a psychological cause. Is there ever a case you can be 100% certain about this?
  6. Yann04

    Austria: WE&ME Foundation (formerly TEMPI-Stiftung, TEMPI-Foundation)

    I think the problem is also that very wealthy people who get ME are likely to be diagnosed and told to rest very early on. Since they have the money to get very good medical care. This increases a lot the chances they will recover within the first few years or follow a very mild illness...
  7. Yann04

    Using deconditioned people as controls

    Totally agree! It might just be hard to find the sweetspot between of someone bedbound but that can also tolerate a nurse present for blood draws and filling questionnaires. As a bedbound person, the idea of someone new in my room who might make noise is terrifying (all noise makes me crash —...
  8. Yann04

    Melinda Gates resigns from Gates Foundation

    Thanks Hutan! I must confess I never actually watched unrest myself, because i was already to severe to watch stuff when I learnt about it. I just used it because it seemed to be the default everyone used…
  9. Yann04

    Melinda Gates resigns from Gates Foundation

    please do I am curious. and tell me if there is an alternative you would recommend :)
  10. Yann04

    Using deconditioned people as controls

    i definetly understand. I think that’s why the MS comparison is often good too. I wonder if elderly people who are “unhealthy” (and deconditioned) because of age but not disease would be a possible help.
  11. Yann04

    Melinda Gates resigns from Gates Foundation

    Obviously type of long covid is not the full picture but it helps to mention something people understand and tweet length limits make it hard to add any nuance
  12. Yann04

    Using deconditioned people as controls

    Do clinical trials usually have Healthy controls? I am not well versed in medicine at all but I was under the impression it was usually a Placebo group and a Drug group for drugs.
  13. Yann04

    Melinda Gates resigns from Gates Foundation

    Obviously not expecting this to be seen, but without hope we have nothing.
  14. Yann04

    Melinda Gates resigns from Gates Foundation

    Man can someone pitch her ME and LC? With the whole neglected illness that primarily affects women angle. Someone put Unrest on her watch list..
  15. Yann04

    Socioeconomic determinants of ME/CFS in Norway: a registry study, Hilland and Anthun, 2023

    Good on them then! My bad to judge before digging deep.
  16. Yann04

    Socioeconomic determinants of ME/CFS in Norway: a registry study, Hilland and Anthun, 2023

    I think they skipped the first semester bachelor presentation of the difference between causation or correlation.
  17. Yann04

    Using deconditioned people as controls

    I mean the point is to get generally deconditioned people right? Do we need such high precision. If we can find one questionnaire that accurately predicts sedenterism and make that the standard (ie. each study doesn’t make up a new questionnaire) it might be a little less precise than counting...
  18. Yann04

    ME Association (UK) Fundraising

    Nominate the ME Association to get funding https://meassociation.org.uk/2024/05/time-is-running-out-could-you-spare-us-a-minute/
  19. Yann04

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    After some criticism on twitter BBC changed the headline of their recent article from Chronic Fatigue Syndrome: Protestors Call for specialist ME services to: ME: Protestors Call for Better Support Good news :) https://www.bbc.com/news/uk-northern-ireland-69000501
  20. Yann04

    Using deconditioned people as controls

    I’m sure there must already exist some activity scoring questionnaire and people could be asked to fill it out and selected if they fit into the “sedentary” category.
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