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  1. WillowJ
    Post

    Orthostatic Symptoms and Reductions in Cerebral Blood Flow in Long-Haul COVID-19 Patients: Similarities with ME/CFS, 2021, Rowe et al

    some ME/CFS patients, like myself, do find problems breathing in their symptom profile. I can't tell how common this is in ME/CFS: some people...
    Post by: WillowJ, Jan 2, 2022 in forum: ME/CFS research
  2. WillowJ
    Post

    CDC Treatment Evidence Review - consultation period

    It would be nice if someone could arrange a conference so those at OHSU could meet and hear the doctors that are studying this disease in good...
    Post by: WillowJ, Jan 2, 2022 in forum: 2021 USA CDC ME/CFS Diagnosis and Treatment Review
  3. WillowJ
    Post

    Advice on mask-wearing to protect against Covid-19

    One also needs to know how to put on and take off the mask. Use the earloops to put the mask on and off. If you have a stash of isolation masks...
    Post by: WillowJ, Apr 2, 2020 in forum: Epidemics (including Covid-19, not Long Covid)
  4. WillowJ
    Post

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    @Forbin that's a cool chart. I'll have to look up my onset year. I had "flu" but I wasn't given a flu test and I recently learned that even during...
    Post by: WillowJ, Apr 2, 2020 in forum: Long Covid news
  5. WillowJ
    Post

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I heard about people in China who are "recovered", test negative, then positive and have "unrelated" symptoms. Type of symptoms unspecified....
    Post by: WillowJ, Apr 2, 2020 in forum: Long Covid news
  6. WillowJ
    Post

    Is there any systematic research into the “ lived experience” of people with ME?

    On the autism paper, I glanced briefly at the abstract (not well enough to do more atm), and saw it was collecting experiences only from parents....
    Post by: WillowJ, Nov 6, 2019 in forum: Psychosomatic news - ME/CFS and Long Covid
  7. WillowJ
    Post

    Is there any systematic research into the “ lived experience” of people with ME?

    I think you meant me by that. :) Thanks for the tag. I will look at the paper sometime when I have a chance, hopefully. I like what you said...
    Post by: WillowJ, Nov 4, 2019 in forum: Psychosomatic news - ME/CFS and Long Covid
  8. WillowJ
    Post

    Is there any systematic research into the “ lived experience” of people with ME?

    My understanding of the point of "lived experiences" is that it's to capture the sort of information that researchers should have looked at but...
    Post by: WillowJ, Nov 3, 2019 in forum: Psychosomatic news - ME/CFS and Long Covid
  9. WillowJ
    Post

    Postcards to Doctors - new project from ME Action

    Oh definitely I wouldn't want to modify it more than that, especially after promising to use their wording. But that seems a good change. :)
    Post by: WillowJ, Nov 3, 2019 in forum: Advocacy Projects and Campaigns
  10. WillowJ
    Post

    Millions of black people affected by racial bias in health-care algorithms

    I'll also draw a parallel to M.E. It's kind of like, when we want to discuss M.E. and the C.D.C., is like, Oh, yeah, great topic: "chronic...
    Post by: WillowJ, Oct 30, 2019 in forum: Other health news and research
  11. WillowJ
    Post

    Millions of black people affected by racial bias in health-care algorithms

    That's probably true, too, but it's also true that there's over-policing of Black people. This actually may begin in school. As you said, the...
    Post by: WillowJ, Oct 30, 2019 in forum: Other health news and research
  12. WillowJ
    Post

    Millions of black people affected by racial bias in health-care algorithms

    There are many kinds of bias. Nobody disputes that there are other kinds of bias. Someone can even have several types of bias applied to them at...
    Post by: WillowJ, Oct 27, 2019 in forum: Other health news and research
  13. WillowJ
    Post

    Article: Brain studies show chronic fatigue syndrome and Gulf War illness are distinct conditions

    I don't follow. ME patients are of diverse race/ethnicity. (Even if mainly well-off white middle aged women are getting diagnosed, we know from...
    Post by: WillowJ, Oct 26, 2019 in forum: ME/CFS research news
  14. WillowJ
    Post

    Article: Brain studies show chronic fatigue syndrome and Gulf War illness are distinct conditions

    Yes, I believe this difficulty has been discussed as some of them haven't been to the Gulf, yet still appear to have GWI. A rename was discussed,...
    Post by: WillowJ, Oct 26, 2019 in forum: ME/CFS research news
  15. WillowJ
    Post

    CDC Treatment Evidence Review - consultation period

    I am wondering how they intend to assess: ""What are the benefits and harms of diagnosing ME/CFS, vs. non-diagnosis?" By using randomized...
    Post by: WillowJ, Oct 26, 2019 in forum: 2021 USA CDC ME/CFS Diagnosis and Treatment Review
  16. WillowJ
    Post

    FOI request re PACE Cost-Effectiveness Analysis

    https://www.clinicalstudydatarequest.com/Help/Help-Review-of-Requests.aspx Here's a link to how requests are reviewed. Stage 1 is conducted by...
    Post by: WillowJ, Oct 20, 2019 in forum: Psychosomatic news - ME/CFS and Long Covid
  17. WillowJ
    Post

    Your experience of ME services - #MEAction UK survey report concludes services 'not fit for purpose'

    excellent work. Thank you. Hope you have a good rest.
    Post by: WillowJ, Oct 18, 2019 in forum: General ME/CFS news
  18. WillowJ
    Post

    Qigong exercise for chronic fatigue syndrome, 2019, Chan et al

    I didn't know that. Thanks for saying. All we need to know about the trial is in these sentences. Symptoms are entirely vague, respondants are...
    Post by: WillowJ, Oct 17, 2019 in forum: Psychosomatic research - ME/CFS and Long Covid
  19. WillowJ
    Post

    Assessment at clinics

    I had another thought. Sometimes after an appointment I get a letter in the mail, or nowadays a link to a webpage, with a survey from a third...
    Post by: WillowJ, Oct 17, 2019 in forum: Advocacy Projects and Campaigns
  20. WillowJ
    Post

    Assessment at clinics

    As far as "how yer doin'" questionnaires, I think at this point these are most useful for keeping a record of signs, sympoms, and practical...
    Post by: WillowJ, Oct 15, 2019 in forum: Advocacy Projects and Campaigns
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