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  1. vsou
    Post

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Also The Chiari EDS Center also now employs: Anne Maitland, M.D., Ph.D. Allergy and Immunology Director MCAS Center “Dr. Maitland has now joined...
    Post by: vsou, May 7, 2023 in forum: ME/CFS research news
  2. vsou
    Post

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    And I see also that Ilene S. Ruhoy, MD, PhD, a neurologist who I thought was in a medical practice with Dr. David Kaufman MD is now Medical...
    Post by: vsou, May 7, 2023 in forum: ME/CFS research news
  3. vsou
    Post

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Just read that Jeff Wood now works as Data Collection and Screening Coordinator for the Chiari EDS Center where Paolo Bolognese, MD is Surgical...
    Post by: vsou, May 7, 2023 in forum: ME/CFS research news
  4. vsou
    Thread

    Folate-dependent hypermobility syndrome: A proposed mechanism and diagnosis

    Looking for views on this study https://www.cell.com/heliyon/fulltext/S2405-8440(23)02594-X Abstract Hypermobility involves excessive...
    Thread by: vsou, Apr 22, 2023, 9 replies, in forum: Fibromyalgia and Connective Tissue Disorders
  5. vsou
    Post

    Oxaloacetate Treatment For Mental And Physical Fatigue In (ME/CFS) and Long-COVID fatigue patients, 2022, Cash and Kaufman

    I was a patient of Kaufman from 2015-2017 and his fees were much much lower than cited above at that time. It seems after cci (both Jen and Jeff...
    Post by: vsou, Jul 3, 2022 in forum: ME/CFS research
  6. vsou
    Post

    Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Brownlie and Speight

    @Jonathan Edwards How useful do you view autoantibodies tests to diagnosis small fiber neuropathy? The paper above cites...
    Post by: vsou, Nov 13, 2021 in forum: ME/CFS research
  7. vsou
    Post

    Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Brownlie and Speight

    @Jonathan Edwards What’s your take on an increasing number of PwPE being diagnosed with small fiber neuropathy (by skin punch biopsy) and being...
    Post by: vsou, Nov 13, 2021 in forum: ME/CFS research
  8. vsou
    Post

    Acceptance and Commitment Therapy for ME/CFS - Discussion thread

    I have done both CBT and ACT and found them extremely helpful—for anxiety and depression. It doesn’t make any sense to me to use either for...
    Post by: vsou, Nov 12, 2021 in forum: Psychosomatic theories and treatments discussions
  9. vsou
    Post

    Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Brownlie and Speight

    I had IVIG treatments in 2016-2017. Prior to that I had subcutaneous immunoglobulin treatment, with no resulting improvement in health from...
    Post by: vsou, Nov 12, 2021 in forum: ME/CFS research
  10. vsou
    Thread

    What is the evidence for collagen degradation in ME/CFS?

    Moved from the OMF news thread. I just watched this talk: [MEDIA] Progress and challenges for a ME/CFS diagnosis - By Prof Ron Davis and Janet...
    Thread by: vsou, Oct 13, 2021, 11 replies, in forum: General and other signs and symptoms
  11. vsou
    Post

    Misrepresentation of ME/CFS in Media Images: A Picture Tells a 1,000 Words. What Story Are We Telling?, 2021, McMillan et al [and 2022 update]

    Interesting discussion. I am severe, and my husband happens to be a retired photojournalist. He took a picture of me sleeping in which I look...
    Post by: vsou, Sep 19, 2021 in forum: ME/CFS research
  12. vsou
    Post

    Oxaloacetate

    Moved post This subject below is the one that I saw posted about elsewhere. I wasn’t aware of PwME supplementing with Oxaloacetate. PwME are...
    Post by: vsou, Aug 24, 2021 in forum: Drug and supplement treatments
  13. vsou
    Post

    IACFSME 2021 Virtual Conference

    I saw a post that elsewhere about this that concerned me and I’m now reading through the Twitter posts and have questions and concerns. On this...
    Post by: vsou, Aug 24, 2021 in forum: ME/CFS research news
  14. vsou
    Post

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    @5vforest I feel exactly the same. I have an upcoming appointment with a new doctor, and was concerned when I recently read a PwME’s account of...
    Post by: vsou, Mar 22, 2021 in forum: ME/CFS research news
  15. vsou
    Post

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    So the scientific evidence isn’t there because it hasn’t been studied. From that we can’t and shouldn’t conclude that serious side effects cannot...
    Post by: vsou, Mar 22, 2021 in forum: ME/CFS research
  16. vsou
    Post

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    If the side effects lead to suicide, whether or not the side effects would have gone away had abilify been discontinued is a moot point.
    Post by: vsou, Mar 22, 2021 in forum: ME/CFS research
  17. vsou
    Post

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    No I am not misinterpreting the facts. Actually yes people have been prescribed abilify for depression at lower doses of 1-2 mg and have...
    Post by: vsou, Mar 21, 2021 in forum: ME/CFS research
  18. vsou
    Post

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    No from what I have read in fb groups these are not things that are occurring with just one (or a few) patients. But they are entangled already....
    Post by: vsou, Mar 20, 2021 in forum: ME/CFS research
  19. vsou
    Post

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    I agree @Hutan I have read similar reports on fb groups. I am concerned about the same issues. It is surprising that Stanford would operate...
    Post by: vsou, Mar 20, 2021 in forum: ME/CFS research
  20. vsou
    Post

    Hypothesis: COVID-19: A methyl-group assault?, McCaddon and Regland, 2021

    I’m the US and was prescribed methyl b12 shots to be self administered but there was sadly no teaching involved. They were done subconsciously...
    Post by: vsou, Mar 9, 2021 in forum: Epidemics (including Covid-19, not Long Covid)
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