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  1. rel8ted
    Post

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

    She is considered a US expert on tethered cord. I have several symptoms of OTC, and I suspected that was an issue before my cervical fusion. I...
    Post by: rel8ted, Sep 8, 2020 in forum: ME/CFS research news
  2. rel8ted
    Post

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

    I had instability causing cord compression in both flexion and extension. I was also unable to hold my neck in a straight upright position for...
    Post by: rel8ted, Sep 3, 2020 in forum: ME/CFS research news
  3. rel8ted
    Post

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

    There were so many going under CCI/AAI evals last autumn that my surgeon literally asked me if there was a billboard with his name on it. He has a...
    Post by: rel8ted, Sep 2, 2020 in forum: ME/CFS research news
  4. rel8ted
    Post

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

    He was very transparent about his experience - very kind of him. I was quite sad for him. I had structural issues in C-spine and had ACDF. Was...
    Post by: rel8ted, Aug 31, 2020 in forum: ME/CFS research news
  5. rel8ted
    Post

    Low‐intensity exercise stimulates bioenergetics and increases fat oxidation in mitochondria of PBMCs from sedentary adults, 2020, Liepinsh et al

    It worries me a lot because I never know when that threshold has been moved and I usually do not realize it until it is too late.
    Post by: rel8ted, Jun 25, 2020 in forum: Other health news and research
  6. rel8ted
    Post

    Is your "startle reflex” super sensitive?

    Riding in a vehicle & being passed by another vehicle on the highway & I am on the floor nearly crying.
    Post by: rel8ted, Jun 14, 2020 in forum: General and other signs and symptoms
  7. rel8ted
    Post

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

    Said person had vEDS and knew it was a huge risk to have the surgery. It isn't like that was a case of uninformed choice. it was a risk:benefit...
    Post by: rel8ted, Jan 31, 2020 in forum: ME/CFS research news
  8. rel8ted
    Post

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

    That was my exact experience times four neurologists. It took one neurosurgeon less than 10 minutes to solve my case. I am post op ACDF to relieve...
    Post by: rel8ted, Dec 7, 2019 in forum: ME/CFS research news
  9. rel8ted
    Post

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

    hEDS can have an issue with the filum not being elastic, and then stretching of the spinal cord can cause injury. Starting at about 4:25, Dr...
    Post by: rel8ted, Nov 7, 2019 in forum: ME/CFS research news
  10. rel8ted
    Post

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

    I feel that your response is very in accurate. How many American football players suffered post concussion syndrome before it was recognized? I...
    Post by: rel8ted, Nov 7, 2019 in forum: ME/CFS research news
  11. rel8ted
    Post

    A Proposed Rule by the Veterans Affairs Department on 02/05/2019 (US format - UK format 05/02/2019)

    I was stuck in the VA system for 2 decades bc I did not have private insurance. I was told everything from conversion disorder to flat out faking....
    Post by: rel8ted, Jun 13, 2019 in forum: Diagnostic Criteria and Naming Discussions
  12. rel8ted
    Post

    Whitney Dafoe Updates

    Yes, exactly. We also are not invisible. Ignored, but not invisible.
    Post by: rel8ted, Jun 5, 2019 in forum: General ME/CFS news
  13. rel8ted
    Post

    Orthostatic intolerance

    I agree completely. If I sit up for extended time, my HR can exceed 100 in that position. I just felt tired and did not realize what was happening...
    Post by: rel8ted, Apr 16, 2019 in forum: Cardiovascular and exercise physiology (CPET)
  14. rel8ted
    Post

    Inversion tables, Jen Brea and feeling better by being Batman!

    That is exactly what ended my love affair with my inversion table. My proprioception has tanked to the point that I rely on my cane to tell me...
    Post by: rel8ted, Mar 21, 2019 in forum: Other treatments
  15. rel8ted
    Post

    A Proposed Rule by the Veterans Affairs Department on 02/05/2019 (US format - UK format 05/02/2019)

    You rarely even see a "licensed physician" there anymore in primary care. They have figured out it is cheaper to use PAs and treating pharmacists...
    Post by: rel8ted, Mar 1, 2019 in forum: Diagnostic Criteria and Naming Discussions
  16. rel8ted
    Post

    GI neuroimmune disruption contributes to Gulf War Illness (2019)

    So, the military used a Myasthenia Gravis drug as "pre treatment" for exposure to nerve gas and now that might be the underlying cause of Gulf War...
    Post by: rel8ted, Feb 23, 2019 in forum: 'Conditions related to ME/CFS' news and research
  17. rel8ted
    Post

    Inversion tables, Jen Brea and feeling better by being Batman!

    We have one. It is terrific for back pain. I used to be able to completely invert and feel great for a little while afterward. Lately, I've had a...
    Post by: rel8ted, Feb 8, 2019 in forum: Other treatments
  18. rel8ted
    Post

    One-sided weakness

    I have had periods of that symptom. Was screened for MS and it was not. As of late, I have a few docs that think it could be MG, but am having a...
    Post by: rel8ted, Feb 5, 2019 in forum: General and other signs and symptoms
  19. rel8ted
    Post

    Any experiences with chronic sinusitis?

    ENT told me to flush with NEiL Med rinse, never use sprays.
    Post by: rel8ted, Jan 24, 2019 in forum: General and other signs and symptoms
  20. rel8ted
    Post

    Low-dose Naltrexone articles and experiences

    Same in the US & the price depended on where it was being shipped. I was unable to afford the LDN.
    Post by: rel8ted, Nov 29, 2018 in forum: Drug and supplement treatments
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