Mast Cells in M.E.

This month a two day summit was held in America for clinicians working in the field of CFS/M.E. and long-time advocates and ME Doctors David Kaufman, Charles Lapp and Susan Levine all discussed the fact that they are now suspecting mast cell activation as either a cause, effect or perpetrator of the disease – their views are outlined in this piece from Medscape.  Having thought this for five years now I hate to say “I told you so” but……..well…………I told you so 😉

All joking aside, I am as convinced as I can be that mast cells play a role in M.E.  Having followed research on the illness now for a quarter of a century it’s the only theory I have come across that even remotely fits every aspect of the disease as outlined in my Canary post.  And in my world, if it looks like a duck and quacks like a duck, chances are it’s probably a duck.  I may be proved completely wrong, but at the moment with the knowledge we have my feet are firmly in the mast cell camp.

The link to the Medscape article was posted on the ME Association’s Facebook page and seemed to ring a bell with quite a few patients.  They all then, naturally, wanted to get tested for mast cell disease in the hopes they would be cured.  I wish it were that simple.

Although I believe mast cells are implicated in M.E. that does not mean I think M.E. is just another name for Mast Cell Activation Disorder.  MCAD is a distinct disease entity.  You can have MCAD on its own, you can have MCAD alongside other diseases like Ehlers-Danlos Syndrome or M.E., of if you’re unlucky you can have both or in my case all three.  Treating the symptoms of MCAD (there is no cure) will do nothing to help your M.E., at least not in my experience.

If mast cells are implicated in M.E. why doesn’t treating the underlying mast cell disease help?  Good question.  I’m not a Doctor or a Research Scientist and even if I were I probably still wouldn’t know the answer.  MCAD was only discovered as a disease a decade ago and we currently know very little about it.  Treatments are available but they’re crude and even leading Doctors in the MCAD field admit they are limited in the ways they can help.

The focus is often on Histamine in respect of MCAD, but it’s only one of 30 chemical mediators expressed by mast cells so is only a tiny part of the MCAD puzzle.  We currently only have the capability to test for half a dozen of the 30 mediators (and in the UK only have the means to test for a couple), so we have a very long way to go in being able to accurately test for mast cell activation.  Even if excess histamine is found to be present it binds to four receptors in the body (at least, we only currently know about four) and we only have drugs to target two of those receptors (H1 and H2), so if H3 or H4 receptors are implicated in M.E. we can’t currently do anything about that.

Being treated for MCAD probably saved my life, but it had little effect on my M.E. with two notable exceptions.  The horrendous insomnia which has plagued me for the 24 years I’ve been ill was helped dramatically when I no longer had stimulating histamine in my brain, and the back pain from which I’d suffered for 30 odd years improved by about 60%.  But I still have M.E. in all its fluey, achey, brain fogged, POTSy, sore throated, weak muscled, post exertional malaise glory.  It’s a bugger.

It’s hugely difficult to get an official MCAD diagnosis here in Britain and most people end up having to go down the very expensive private route as MCAD still isn’t officially recognized here in the UK so isn’t funded on the NHS.  There are a couple of NHS Consultants who might see you but in practice only if you have severe disease and have classic MCAD symptoms like flushing, hives and a history of anaphylaxis which has been confirmed isn’t due to allergies.  Having received your diagnosis, treatments are limited and in my case the very fact I have MCAD and my mast cells reject drugs on a grand scale means I have anaphylaxis to the tablets needed to treat my anaphylaxis, which would be hilarious if it weren’t so scary.

To anyone reading this who wants to rush out to see an MCAD specialist trust me when I say you’re heading down a difficult and potentially expensive road with no real destination, so think carefully about whether or not you want to spend your energy doing that before you start.  I’m not saying don’t, just that it’s probably not going to help your M.E. so unless you have clear symptoms of MCAD and are debilitated by those it will all be a bit pointless.

Having said all that I’m still hugely excited by the fact that Doctors are picking up on the fact that M.E. and MCAD might be related.  It’s no coincidence that Doctors seeing Hypermobile Ehlers-Danlos patients were finding that a large sub-section of those also had MCAD, and it’s no coincidence that many of those also had a diagnosis of M.E.  The hEDS/POTS/ME triangle is well known about in the patient population and the underlying common denominator appears to be mast cell activation.



4 thoughts on “Mast Cells in M.E.

  1. Sarah

    I thought for a long time it was a histamine problem. I developed hayfever for the first time the same year as I went down with ME. Every year a new problem has surfaced with regards to allergies where it was soft fruit, then the sun, my own sweat, water, sawdust, dust and plastic. All bring me up in a rash. The fact most of our food is packaged in plastic makes me question whether it is the chemicals coating the plastic enters our systems through digestion which in turn release histamines in response.
    It would be good to research the timing of the increase in use of plastic packaging and compare it to the noted cases of ME. I’m sure there would be a direct correlation
    In the olden days (people just love that term😁) people went to their butchers, bakers and greengrocers. The food would be in paper bags or fabric shopping bags
    Our milk is sitting in plastic bottles for over a week, our bread in plastic bags. Even our medicine to treat this is mostly in plastic!
    They used to blame the fillings in our teeth, so plastic isn’t so far fetched

    My fatigue did reduce at the same time as I was put on a high dose of anti histamines by the dermatologist but this was at the same time as I was put on steroids too.

    Iceland the shop is moving forward, removing all plastics from their packaging. Hopefully others will follow suit. If not, I know where I will be shopping


  2. David


    I‘ve read a lot of your Posts and I‘m in. A Situation like yours. Eds, m.e., Mcad and much more meanwhile. I‘m in this Situation since 21 years now and it became very serious whithout any help left. MaY I ask you, how you were able to thread your Mcad? I‘m Not.

    Trank you for your Feedback and all the good 🙂


    1. Jak Post author

      Hi David

      There are drugs you can buy yourself to help with MCAD – most people take both H1 and H2 antihistamines like Zantac and Zyrtec. Some people also see a little help from taking baby asprin, though other people can react badly to this.

      Then there are drugs only usually prescribed by a specialist. These are things like Sodium Chromoglycate, Montelukast and Ketotifen.

      Supplements which may help are slow release Vitamin C and Neuroprotek which contains Quercetin, Rutin and Leutolin which mast celll researcher Dr Theoharides has found to be beneficial – you can buy this on Amazon.

      For me a low histamine diet has been massively important – you can read about this if you click on the Low Histamine Food Info tabs on my blog.

      Hope this is helpful


  3. Jan Groh

    Funny, this is the whole reason my domain name is Oh TWIST, as in “Oh That’s Why I’m So Tired”, because I feel I was MIS diagnosed with CFS/ME 30 years ago – called “CFIDS” back in the day. I think all of my fatigue can be chalked up to my MCAS, EDS and dysautonomia now myself. As opposed to what I consider actual CFS/ME as you’ve described, as I shared in this post here

    Oh I had plenty of down days, and still have plenty of fatigue and pain (just ask my boss – I’m stepping back down from my job because of it), but.. not the mostly bed-ridden, barely managing/barely alive kind you and Jen Brea have depicted and described so well. (Not counting those wonderful “masto-comas” as we unofficially call them in the support groups, that resemble a sort of narcolepsy sometimes – those are definitely MCAS driven for me.)

    So I’m glad to see they see a mast cell component to it too, though I don’t think that’s the full explanation for some of you who are so much worse than I in this department. I feel like there’s some extra layer going on – mitochondrial perhaps? Additional immune trouble? The cell danger response someone else has mentioned? Autoimmune? Who knows… it’s just really clear some of you have a much greater, more debilitating response to activity and stress than others of us.

    I dearly hope they uncover whatever it is soon!

    Liked by 1 person


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