Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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What's the most similar disease to ME/CFS for assessing off-label treatment options?

Discussion in 'General Treatment' started by Jesse2233, Aug 22, 2017.

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What's the most similar disease to ME/CFS for assessing off-label treatment options?

  1. Rheumatoid arthritis

    0 vote(s)
    0.0%
  2. Multiple sclerosis

    3 vote(s)
    37.5%
  3. Sjorgen's syndrome

    0 vote(s)
    0.0%
  4. Lupus erythematosus

    0 vote(s)
    0.0%
  5. Crohn's disease

    2 vote(s)
    25.0%
  6. Scleroderma

    0 vote(s)
    0.0%
  7. Myasthenia gravis

    0 vote(s)
    0.0%
  8. PANDAS/PANS

    0 vote(s)
    0.0%
  9. Guillain Barre

    3 vote(s)
    37.5%
  1. Jesse2233

    Jesse2233 Senior Member

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    To be clear I'm talking about post-viral ME/CFS of a likely autoimmune origin.

    --------------

    There are many drugs that few ME/CFS patients have tried, and many people with "chronic fatigue" inadvertently mischaracterize themselves in drug review databases. As a result there are a lot of nebulous diagnoses and limited treatment entries when ME/CFS is used as a critieria for drug review sites.

    So recently, while trying to find a good immunosuppressive drug, I've been looking at other major autoimmune disease treatment reviews to see what puts people into remission in those conditions.

    Which disease is the best analogue? I don't think anyone knows for sure, but my hope is that some crowdsourced wisdom will provide a degree of clarity. Thus this poll.

    ----------------

    If an option is not listed here, please post it below.

    Thanks!

    PS - I've purposefully left off POTS/dysautonomia, MCAS, MCS, Lyme, and fibromyalgia because they are so commonly co-morbid and tend to suffer from the same review issues as ME/CFS.
     
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    As an international authority on autoimmune disease I can confidently say that we have no idea.
    Several conditions on your list are not autoimmune diseases.
     
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  3. Valentijn

    Valentijn Senior Member

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    That's a lot of assumptions which don't seem particularly warranted based on the available evidence.
     
    barbc56 and arewenearlythereyet like this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Mollarets meningitis although not autoimmune, it is an interesting comparison to cfsme.
     
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  5. Jesse2233

    Jesse2233 Senior Member

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    Which evidence? It seemed the growing consensus at the OMF Symposium was an autoimmune etiology. Perhaps the "post viral" should be "post infectious"
     
  6. Jesse2233

    Jesse2233 Senior Member

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    Do you think there's any value in looking at other autoimmune / inflammatory diseases to asses treatment options?
     
    62milestogojoe and Gingergrrl like this.
  7. Gingergrrl

    Gingergrrl Senior Member

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    USA
    Jesse, Maybe put MG/LEMS to include both?
     

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