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  1. Neunistiva

    Open Medicine Foundation Receives Monster Donation For ME/CFS

    I was thinking about this as well. I think ME/CFS is a complex illness, but unlike AIDS or cancer, maybe it's just our bodies being out of whack and all they need is a little push in the right direction to snap themselves out of this. Hopefully with an already-FDA-approved drug. But now I'm...
  2. Neunistiva

    NIH Funds Chronic Fatigue Sydrome (ME/CFS) Grant to Increase Blood Volume

    Are there any updates from this study? Is it still scheduled to complete January 2018?
  3. Neunistiva

    NIH Stumbles: Asks ME/CFS Denier to Speak on Chronic Fatigue Syndrome

    This is really what I don't get. How can this kind of animosity and hatred towards patients be tolerated, even if they are psychiatric patients?
  4. Neunistiva

    Pineal Gland Cyst

    As far as I know pineal gland cysts smaller than 0.5 cm are relatively common, and don't pose any danger. When I had MRI, mine was bigger than 2 cm and they removed it immediately. I didn't notice any change in symptoms, but my ME/CFS was progressively worse from day 1, and I am severe now.
  5. Neunistiva

    UK Study on Obesity in Chronic Fatigue Syndrome Underscores Unimaginative Research Effort

    Notice that these are all mildly affected patients. I bet if they looked at us severe ones they would actually see the increase of patients who are underweight. Chewing takes a lot of energy, and gastrointestinal issues also get more severe as the illness progresses.
  6. Neunistiva

    The new Naviaux study is up! Metabolic features of CFS

    MEAction:: "Naviaux’s study in a nutshell states that the cells of ME patients are in a sort of protective hibernation" Q&A with Dr. Naviaux: "I wouldn’t use the term hibernation to describe chronic fatigue syndrome. Humans do not hibernate. Hibernation is just one of a handful of...
  7. Neunistiva

    The new Naviaux study is up! Metabolic features of CFS

    They were not using that comparison for describing patient symptoms and experience, but for describing what's happening at cellular level with metabolites.
  8. Neunistiva

    How about a piece of gum, a mint or maybe some soy milk - aspartame and glutamate

    Just a warning about Mercola and his site that you linked: He regularly goes against good quality scientific research. He questions that HIV causes AIDS, he is against surgeries, against vaccines, claimes mobile phones and microwaves emit dangerous radiation, supports homeopthy... in other...
  9. Neunistiva

    milk protein intolerance

    Interestingly, I developed milk intolerance only after almost 7 years of ME/CFS.
  10. Neunistiva

    Metabolomics Study in CFS to be published august 31

    Is this work Dr. Naviaux is doing in any way connected to his collaborative metabolomics study with OMF?
  11. Neunistiva

    Ron Davis on Possibly Explaining (Almost) Everything in ME/CFS: The #MissingMillions Talk

    This is the first time I've felt real hope since I've gotten ill 7 years ago...
  12. Neunistiva

    Put Yourself on the ME/CFS and/or Fibromyalgia Disease Maps

    I'm the only one in my whole country... so there's that.
  13. Neunistiva

    Novel Finding Sparks NIH Chronic Fatigue Syndrome (ME/CFS) Gut Study

    I find this fascinating. I have a rather severe case of ME/CFS and I have tested positive for anti-gliadin antibodies (AGA-IgA) several times, while all the other ones were negative. However, I've tried gluten free diet for half a year and noticed no difference. I wonder if these findings...
  14. Neunistiva

    NIH Budget Increase Could Be Turning Point For Chronic Fatigue Syndrome

    This indeed is amazing news. Is there anything us patients can do to help push?
  15. Neunistiva

    A 30 Year Learning Curve: A Naturopathic Doctor on Treating Chronic Fatigue Syndrome

    What if ME is autoimmune in some? Would strengthening the immune system cause even bigger damage then?
  16. Neunistiva

    Tom Kindlon, ME/CFS Patient & Advocate, Reviews "Forgotten Plague" - THUMBS UP

    I've received the film as a Kickstarter backer. I've seen only half so far because I have rather severe case of ME, and listening to voices talk with the loud background music on is just exhausting. But so far I really like what was said and I reckon healthy people won't have that problem.
  17. Neunistiva

    Resource ME/CFS Organizations Demand Congress Restore CDC Funding Program [Deleted]

    Ok, I wrote a Tweet to Last Week Tonight and John Oliver. Please like and retweet to gain awareness. Also, feel free to follow me, I will only tweet about ME/CFS.
  18. Neunistiva

    Resource ME/CFS Organizations Demand Congress Restore CDC Funding Program [Deleted]

    So far people are really responding well to the thread at Last Week Tonight. CFS/ME is the most commented and liked thread of ALL TIME on Last Week Tonight's message board. And not only that but comments are spot-on, moving, and contain correct information. I'm kind of proud of ME/CFS...
  19. Neunistiva

    Resource ME/CFS Organizations Demand Congress Restore CDC Funding Program [Deleted]

    Yes, that's the main problem, so much we could do so little energy. I chose John Oliver's Last Week Tonight because they spend 20 minutes going in-depth into the subject and have already reportedly caused a difference for many issues.

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