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"Exercise Tests Suggest Autoimmunity..." Cort Johnson

Discussion in 'Latest ME/CFS Research' started by Diwi9, Aug 16, 2017.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I agree and this will be really interesting! Do you know how close Dr. Kem is to releasing this info?
     
  2. Strawberry

    Strawberry Senior Member

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    A few weeks ago my allergy Dr had me take a short walk (less than two blocks) outside to test my blood oxygen. Even though I was losing my train of thought (difficult to answer the nurses questions about my daughter!) and was sucking air like I had just ran a race, my blood oxygen in my finger stayed at 98% the entire time.

    Do I fit this study??

    (I could also post a story from almost 30 years ago where a doctor said I was a scared hyperventilating rabbit running around in a panic all the time, but that belongs in another thread I guess) :rolleyes:
     
  3. Lynn

    Lynn Senior Member

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    I tried Hupersine A. It made me feel awful (can't remember the symptoms though:thumbdown:). If I was sensitive to that, does it mean I probably won't tolerate Mestinon?

    Lynn
     
  4. perrier

    perrier Senior Member

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    Be careful. Mestinon is not nirvana. Many CFS doctors have been using it for at least 10-15 years. It can make one very sick. It did my daughter.
     
    Learner1 likes this.
  5. perrier

    perrier Senior Member

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    Yes, I'm very interested in this point. Because, someone correct me if I'm wrong, but autoimmune illnesses can't be cured. Look at MS lupus RA.

    I sure hope CFS isn't autoimmune. Any thoughts?
     
  6. Manganus

    Manganus Senior Member

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    It may be correct. But I, personally, much prefer a situation where ME can be diagnosed and explained.
    If the inner workings of this syndrom can be understood and explained, it gets so much easier to find the best treatments.
     
    Helen and TrixieStix like this.
  7. NelliePledge

    NelliePledge plodder

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    First time I've seen any mention of Mestinon whereas I have seen a few other medications mentioned so surprised you reckon it is used by many doctors. Of course no medication in the UK anyway so it isn't something that's I'm likely to be trying. I was interested in it as not heard of before and wondering whether it was one of the existing medications that Dr Ron Davis and OMF are testing on ME/CFs cells.
     
  8. Learner1

    Learner1 Forum Support Assistant

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    Er... the general belief at the OMF Symposium was that it is autoimmune.

    I have seen Hashimotos antibodies go away with nutritional intervention. And, I believe that the benefit of Rituximab etc is for autoimmune antibodies to go away... or am I missing something?
     
    Last edited: Aug 18, 2017
    Gingergrrl and perrier like this.
  9. perrier

    perrier Senior Member

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    My concern is there are no treatments for autoimmune diseases: MS lupus etc
     
  10. Learner1

    Learner1 Forum Support Assistant

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    One must be careful with these drugs. If you have a problem it can solve, great. But it doesn't sound like its for everyone...

     
  11. Manganus

    Manganus Senior Member

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    There are treatments, although not necessarily a cure.
     
    TrixieStix likes this.
  12. Jesse2233

    Jesse2233 Senior Member

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    Better autoimmune than a virus with no antiviral or permanent brain damage
     
    TrixieStix, Learner1 and Gingergrrl like this.
  13. adreno

    adreno PR activist

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    Yes.
     
  14. alex3619

    alex3619 Senior Member

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    You might. This is about distribution of oxygen in large part, not just the oxygen concentration. Its very difficult to be sure of much right now, we need more data, and I have not read a paper on this yet. If the oxygen does not reach the tissues needing it then pushing those tissues will lead to problems.

    Its fair to say that the evidence so far suggests these findings, presuming for now they are correct, are not the whole story.
     
    lansbergen likes this.
  15. TrixieStix

    TrixieStix Senior Member

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    "There are more than a dozen disease-modifying treatments approved for use in MS...."

    https://msfocus.org/Treatments-for-multiple-sclerosis.aspx

    There are also some treatments for Lupus available.

    "2011 saw the U.S. Food and Drug Administration’s (FDA) historic approval of BENLYSTA® (belimumab) for systemic lupus erythematosus (lupus), launching the first safe and effective treatment for lupus in more than half a century."

    http://www.lupusny.org/about-lupus/lupus-treatments
     
    Murph likes this.
  16. abc123

    abc123

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    Thanks for mentioning this lab.

    http://www.celltrend.de/cfs-diagnostics.html

    Were test results informative for you, or others with ME/CFS, do you know...?
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    They were definitely informative for me b/c I learned I was positive for 7 of the 9 autoantibodies and this helped my doctor confirm that I have "Autoimmune POTS" and helped (along with other autoantibodies) to get insurance auths for treatments.
     
    Molly98 likes this.
  18. gregh286

    gregh286 Senior Member

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  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    There are lots of treatments for autoimmune disease and in the last ten years we have identified treatments that keep people completely well for many autoimmune diseases. Some autoimmune diseases, like immune thrombocytopenia quite often go into permanent remission and more often after treatment. Lupus frequently settles after an initial stormy period and with current drugs getting lupus patients staying well until the disease fades away (as it often does in mid life) is a very achievable objective. There will be further major advances over th next few years.
     
    XenForo, Aroa, manasi12 and 12 others like this.
  20. Gingergrrl

    Gingergrrl Senior Member

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    There is not a treatment plan for these autoantibodies per se (that I am aware of) but they helped to form an overall picture of autoimmunity in my case which helped guide my doctor in his treatment plan for me and helped with insurance Auths.
     

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