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  1. S

    Video: Millions Missing Canada impromptu protest at Meet&Greet confronting Health Minister

    Thanks @Cort It was a team effort, both with the folks (just) healthy enough to come, and the more severe ME patients from their homes - I'm just fortunate to be healthy enough to be a loud mouth!
  2. S

    ME,CFS,EDS,FM,MS,Myasthenia Gravis and Alzheimers and Acetylcholine

    Wow, you've connected some dots, but its too technical for my wee brain at the moment, however the association between the diseases you list (POTS, ME, CFS, MS, Autoimmune Myasthenia Gravis, Rheumatoid Arthritis and Pseudocholinesterase Deficiency, and Alzheimer's) makes me wonder if one day all...
  3. S

    Poll Having you ever been accused of "faking it"

    Your experience supports the idea that ME patients should consider audio recording important meetings related to their health.
  4. S

    How your brain heals itself - new hope for people with chronic pain, multiple sclerosis and more

    It decreased my nausea, moved my PEM threshold, decreased anxiety, overall felt less sick, normalized (well not normal, but less abnormal) my breathing, heart beat, and bowel movements. I use it on my brain stem.
  5. S

    New device designed to restore brain functions – via the tongue

    As mentioned in Doidge's book: http://www.heliusmedical.com/divisions/neurohabilitation/pons-device ETA: a video interview - interesting that Montel Williams was key... http://www.heliusmedical.com/press-releases/helius-medical-developing-new-tech-brain-trauma
  6. S

    How your brain heals itself - new hope for people with chronic pain, multiple sclerosis and more

    I found the chapter on light / laser therapy helpful, the stuff about ATP, cell regulation, anti-inflammatory applicable to ME - the doctor that he profiled, Dr Khan, has his office in my city - I went to see him on April 22, 2015 when I was pretty much house bound, I had 3 successive days of...
  7. S

    End ME/CFS Severe Patient Study Turns to the Mitochondria

    I have not heard or read that before. (And find it unlikely in my experience). Do you have some references? Thanks.
  8. S

    Pectus Excavatum

    I've never heard of pectus excavatum. The exercise intolerance is especially interesting. But I have had the same experience - I have a whole whack of abnormal lab results and my doc has never mentioned them - I only know because I ordered a copy of my medical file.
  9. S

    NIH Presentation on Chronic Fatigue Syndrome (ME/CFS) Study Hits the Mark

    Pardon my fog - I did indeed err - Walitt is the psychobabbler. (not sure who you want credited for that term ;))
  10. S

    NIH Presentation on Chronic Fatigue Syndrome (ME/CFS) Study Hits the Mark

    Nath is a psychobabbler. Many have concerns over his involvement in this study.
  11. S

    Poll Having you ever been accused of "faking it"

    Some people have psychological issues and / or a personality disorder. You may have just encountered one of them.
  12. S

    Hi from new member.M.E recovery/ pandemrix

    It helped me a lot due to butyrate.
  13. S

    Retrovirus At The Root Of Multiple Chronic Diseases

    That page you linked says: "There is currently no effective standard treatment for AIDS, and none anticipated." The site is nothing but irresponsible bible-babble. @RuthAnn Providing that link is not helpful. Potentially harmful and deadly.
  14. S

    Solve ME/CFS Talks With Dr. Whittmore About dr. Wallit

    I'm trying to reconcile that statement with a 40 patient co-hort.
  15. S

    The Psychosomatic Researcher in the NIH's Big Chronic Fatigue Syndrome (ME/CFS) Study

    Its a quack.
  16. S

    Cry, Laugh or Crucify (please wathever you do, Crucify) Brian Walitt’s, lead investigator thoughts.

    The squeaky wheel gets the grease. Public outrage is the most effective response. And can take many forms. The more the better. Facebook is our friend.
  17. S

    HPA axis discussion

    I have an 'effaced sella' (and ME) - any body know what testing I should ask my doctor?
  18. S

    NINDS Director Expresses Shock (and Awe) at Community Response to Clinical Center Study Protocol

    Anger can be a sign of trauma. Many folks with ME have been traumatized by the medical / research institution. Their anger is valid.
  19. S

    NIH Responses Put Major ME/CFS Study On Right Track

    It is unfortunate that the NIH has repeatedly failed to consult or communicate with the ME patient population. It was only by chance that the authors had the meeting and could raise concerns. It does not mean the NIH will listen.
  20. S

    A drug against AIDS could be effective against the herpesvirus

    I have had significant improvement in the last 3.5 weeks by cutting way down on sugar and carbs and using butter (for butyrate) and digestive enzymes. I'm now walking about 15,000 steps a day (no hills) and no pem. I'm beginning to suspect I may be of the 'leaky gut' sub-group of ME.

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