The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Mast Cell Activation May Underlie 'Chronic Fatigue Syndrome' (from Medscape March 13, 2018)

Discussion in 'Mast Cell Disorders/Mastocytosis' started by CD40, Apr 9, 2018.

  1. CD40


    Article from Medscape March 13, 2018

    Mast Cell Activation May Underlie 'Chronic Fatigue Syndrome'

    SALT LAKE CITY, UT — Mast cell activation syndrome (MCAS) may be an overlooked yet potentially treatable contributor to the symptoms of chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS), say physicians who specialize in ME/CFS and its manifestations.

    The subject was discussed during a 2-day clinician summit held March 2 to 3, 2018.

    From article:
    Kaufman first learned about MCAS about 5 years ago from a patient who introduced him to the published work of mast cell expert Lawrence Afrin, MD. "I spoke to him and then I started looking for it, and the more I looked, the more I found it," Kaufman said, estimating that he has identified MCAS in roughly half his patients who meet ME/CFS criteria.

    From article:
    Another panel member, New York City ME/CFS specialist Susan M. Levine, MD, also said she sees MCAS frequently. "I suspect 50% to 60% of ME/CFS patients have it. It's a very new concept."

    From article:
    Kaufman said that initially after he learned about MCAS, he would only run the laboratory tests in patients with suggestive clinical history, such as food sensitivities/triggers, rashes, hives, temperature intolerance, or chemical sensitivities. "But ultimately, I had patients [for whom] I couldn't figure out what was going on; I would check, and started finding positives in patients I wasn't suspicious of."

    So, now he just tests for it in all his patients with ME/CFS. "It's bigger than allergy,"

    Link to Medscape, requires registration:

    Article is also on Reddit:
    Inara, lafarfelue, Dmitri and 3 others like this.
  2. Hip

    Hip Senior Member

    That Medscape article has a misleading title when its says MCAS may underlie ME/CFS. Underlie means be the cause or basis of something.

    But then in the first sentence, the article says MCAS may be a treatable contributor to the symptoms of ME/CFS. Which is a different thing. Quite a few ME/CFS doctors appreciate this contribution to ME/CFS symptoms MCAS can have.
    Inara, jpcv, ahmo and 1 other person like this.
  3. Learner1

    Learner1 Forum Support Assistant

    Pacific Northwest
    My last discussion with Dr. Kaufman on it is that my MCAS, as that of many of his patients, seems to be autoimmune. Just as my POTS is.

    There also is mast cell disease that's genetic, which can be very serious.

    The hope with autoimmune MCAS is that it can be lessened or even cured, as in the attached case study, where, aside from SIBO, I'm on pretty much the same protocol. There are other possibilities for treatment as well.

    However, I don't think it underlies or contributes to my ME/CFS. Its a comorbidity.

    Attached Files:

  4. Gemini

    Gemini Senior Member

    East Coast USA

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