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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Poll: Does your ME/CFS include MCAS?

Discussion in 'Hypersensitivity and Intolerance' started by GodGenghis, Mar 4, 2017.

?

I have ME/CFS and....

  1. I also have MCAS (Mast Cell Activation Syndrome)

    18 vote(s)
    39.1%
  2. I do not have MCAS (Mast Cell Activation Syndrome)

    28 vote(s)
    60.9%
  1. GodGenghis

    GodGenghis

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    I suffer from terrible mast cell issues along with my ME/CFS. Smokes, Molds, Fragrances, and chemicals from new products like furniture, clothing, and general merchandise all set me off terribly. I was under the impression that this was true for the majority of ME/CFS sufferers, but another patient has caused me to doubt this. I hope you'll participate in this poll so we can see how prevalent MCAS is among those with ME/CFS.
     
    Last edited: Mar 4, 2017
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    What you are describing sounds more like Multiple Chemical Sensitivity than Mast Cell Activation Syndrome.

    And while I suspect it is different for others I do have mild MCAS which has developed over time. I had been mildly ill with ME for decades and the MCAS developed as I got more ill.
     
  3. ryan31337

    ryan31337 Senior Member

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    South East, England
    Having spent some time around MCAS communities recently I've seen quite a few people with solid MCAS diagnosis reliably experience reactions (typically anaphylaxis) from fragrances and chemicals - it can very much be an MCAS thing.

    I've been under suspicion for MCAS but I'm lucky to be far more mild. I have the basic common stuff like
    pruritus, dyshidrotic eczema, bloating & stomach pain when I react, though usually only to something ingested. On occasion it will progress to diarrhoea & blood pressure swings, which I guess could be argued as low level ana.

    I'm of the opinion mine is more related to mast cell provocation from POTS and SIBO, rather than a 'true' MCAS, whatever that is!
     
    ahmo likes this.
  4. GodGenghis

    GodGenghis

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    How do you differentiate between MCAS and MCS? I see the two terms as synonymous. If MCS isn't mast cell mediated i'm not sure what else would explain it.
     
  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    I actually don't know what the difference is between MCS and MCAS. From reading here on PR your post sounded more like what is described as MCS. I'd be interested to know the difference from anyone who knows the difference.

    Just as information--I have a heightened sense of smell and many smells annoy me if strong but I don't think this is what is meant by MCS. I also have a heightened sense of hearing so I think of it that way. My MCAS is a growing list of allergies for which I need to take antihistamines etc.

    But as I said I'd like to understand the difference too.
     
    GodGenghis likes this.
  6. Skippa

    Skippa Anti-BS

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    I always suspect something along these lines, in a mild way (some triggers are a pain but others seem fine), but I don't have a diagnosis and it's not bad enough to seek one.

    So I'll abstain,
     
    GodGenghis likes this.
  7. junkcrap50

    junkcrap50 Senior Member

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    I encourage everyone to read Dr. Afrin's book Never Bet Against Occam: The Chronic Illness Connection?. He is the expert on MCAS in the US. He believes 10-17% of all Americans have some degree or type of MCAS. He presents a lot of evidence that MCAS's symptoms are much wide ranging than the typical highly reactive and high sensitivity to fragrances, chemicals, medications, etc (typical triggers). Many symptoms you wouldn't think would be related to MCAS have gone away after he successfully applied MCAS treatments. He really opened my eyes about the topic and I now believe that MCAS has an important role in CFS.

    EDIT: Fixed book title
     
    Last edited: Apr 18, 2017
    ebethc and ahmo like this.
  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    I think the title of the book is 'Never bet against Occam'
     
  9. Hip

    Hip Senior Member

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    MCAS and MCS are two distinct conditions.

    The Wikipedia MCS page does not mention MCAS, and the Wikipedia MCAS page does not mention MCS.

    The comprehensive list of proposed physical mechanisms (and the discounted psychological mechanisms) for MCS provided by James Madison University does not mention MCAS.

    Nobody knows what causes MCS for sure, but there are many theories. Whereas the cause and mechanism for MCAS is known.


    To have MCAS, you would probably satisfy the proposed diagnostic criteria for MCAS, which are the following:
    Source: Table II of the paper: Mast Cell Activation Syndrome: Proposed Diagnostic Criteria
     

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