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  1. Michelle
    Post

    EDS, hypermobility, and the link, if any, to ME/CFS

    I was always too ill to participate in this thread whenever it was active but I have had a number of thoughts and questions that I would still...
    Post by: Michelle, Jan 29, 2024 in forum: Fibromyalgia and Connective Tissue Disorders
  2. Michelle
    Post

    Brain FADE syndrome: the final common pathway of chronic inflammation in neurological disease, 2024, Khalid A. Hanafy

    Since entering perimenopause, I've been having this very thing. A week after one of only two periods in 2022, that icky flu-like feeling began to...
    Post by: Michelle, Jan 26, 2024 in forum: Long Covid research
  3. Michelle
    Post

    Sleep problems in ME/CFS - discussion thread

    I know, right? I read Matthew Walker's Why We Sleep a few years ago but like most neuropsychs he so overeggs our knowledge about what we actually...
    Post by: Michelle, Dec 16, 2023 in forum: Sleep Disturbance
  4. Michelle
    Post

    Sleep problems in ME/CFS - discussion thread

    I use either Gron chocolates or Tasty's gummies. I wasn't sure if it was ok to link to their websites from here given that S4ME is a UK site and...
    Post by: Michelle, Dec 15, 2023 in forum: Sleep Disturbance
  5. Michelle
    Post

    Sleep problems in ME/CFS - discussion thread

    HRT is a tricky one for me. Because of my history of blood clots, my gyno refused to prescribe even the Estradiol patch despite the fact that on...
    Post by: Michelle, Dec 15, 2023 in forum: Sleep Disturbance
  6. Michelle
    Post

    Sleep problems in ME/CFS - discussion thread

    Ah, yes. I sleep through the night maybe once or twice a year going on 15 years or more now. And perimenopause has just made it worse. I've had...
    Post by: Michelle, Dec 15, 2023 in forum: Sleep Disturbance
  7. Michelle
    Post

    Deriving and validating a risk prediction model for long COVID, 2023, Jeffrey et al

    I've written in an earlier post that I experienced an improvement in my symptoms while on low-dose heparin. But like you, it was part of a number...
    Post by: Michelle, Dec 11, 2023 in forum: Long Covid research
  8. Michelle
    Post

    Review Does the effect of CBT for CFS (ME/CFS) vary by patient characteristics? A systematic review and individual patient data meta-analysis, 2023, Knoop

    Why do these people think that I give a rat's f*** about what bubble I fill in on a questionnaire?! What I care about is, how much time can I...
    Post by: Michelle, Nov 8, 2023 in forum: Psychosomatic research - ME/CFS and Long Covid
  9. Michelle
    Post

    Opinion Creating a “Brain-Mind-Body Interface Disorders” Diagnostic Category Across Specialties 2023 Maggio, Adams and Perez

    Isn't the brain, you know, sorta, kinda part of the body? Do they think if they throw in/separate the brain from the body it sounds, somehow, more...
    Post by: Michelle, Oct 19, 2023 in forum: Psychosomatic research - ME/CFS and Long Covid
  10. Michelle
    Post

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Ah yes, I had forgotten about that. I have sensed over the years that we have a bit of a reputation for being "the mean kids" (not just among...
    Post by: Michelle, Sep 29, 2023 in forum: Petitions
  11. Michelle
    Post

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Yes, as an American I'm both surprised and a little embarrassed. What's going on with ME Action?! Solve?! Even, er, the Other Forum? I dunno....
    Post by: Michelle, Sep 29, 2023 in forum: Petitions
  12. Michelle
    Post

    Sewing and accessible sewing machines

    THIS is my main problem with sewing. The sewing bit isn't too hard for me. It's the cutting patterns out that absolutely floors me. I always...
    Post by: Michelle, Sep 28, 2023 in forum: Home adaptations, mobility and personal care
  13. Michelle
    Post

    USA: Yale Long Covid clinic - Professor Lisa Sanders

    I actually just listened to Lisa Sanders's book Every Patient is a Story a couple of weeks ago. For the most part it was a very interesting look...
    Post by: Michelle, Sep 18, 2023 in forum: USA clinics and doctors
  14. Michelle
    Post

    SARS-CoV-2 infection and long COVID among California farmworkers, 2023, Mora et al.

    OMG thank you for this link! I've spent the last half hour watching his videos and haven't laughed so hard in a long time. Laughed so hard it...
    Post by: Michelle, Sep 17, 2023 in forum: Long Covid research
  15. Michelle
    Post

    Commentary — Post-Acute Sequelae of SARS-CoV-2: More Than Deconditioning, 2023, Phillip Joseph; Inderjit Singh

    Is this the first group to do iCPET aside from Systrom's group? I've been wondering why nobody else was trying to replicate Systrom's iCPET and...
    Post by: Michelle, Sep 11, 2023 in forum: Long Covid research
  16. Michelle
    Post

    Medicine is plagued by untrustworthy clinical trials. How many studies are faked or flawed?

    If anyone is interested in listening to this article, it was recently Nature's "audio long read": [MEDIA]
    Post by: Michelle, Sep 4, 2023 in forum: Research methodology news and research
  17. Michelle
    Post

    Trial Report Home-based testing protocol to measure physiological responses to everyday activities in ME: a feasibility study, 2023, Clague-Baker et al

    @sarahtyson Thanks for stopping by again to this thread and sharing your thoughts. It's really helpful for us as patients and, I think, for you...
    Post by: Michelle, Aug 28, 2023 in forum: ME/CFS research
  18. Michelle
    Post

    Fundraising for ME/CFS research - opportunities, problems

    Facebook encourages one to fund-raise for their birthday. The first year they suggested it, I chose the Solve ME/CFS Initiative (which was also...
    Post by: Michelle, Aug 23, 2023 in forum: General Advocacy Discussions
  19. Michelle
    Post

    Severe ME Day, August 8 2023 and Severe ME week

    Thank you so much for this, @Grigor. I'm going through the worst, most sustained crash since The Great Crash of Autumn 2020 and it's been rough....
    Post by: Michelle, Aug 10, 2023 in forum: General ME/CFS news
  20. Michelle
    Thread

    "An Invitation to a Secret Society", 2023, Mastroianni

    You may remember Adam Mastroianni from such threads as this (about why peer review is crap) or this (about how people believe things could be...
    Thread by: Michelle, Aug 2, 2023, 0 replies, in forum: Research methodology news and research
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