Mast Cell Activation Syndrome (MCAS) - discussion thread

Jonathan Edwards said:
Yes, that sounds like some sort of sympathetic flushing mechanism rather than inflammation, if it is both hands or both feet - neurally mediated.
Click to expand...
I sometimes get only one red/blue/purple and swollen foot or hand. They can become very painful to walk on due to the swelling. I’m assuming >23 hrs of bedrest isn’t helping. And it’s nothing like an allergic reaction, it’s blood pooling. If I press on the skin, it takes many seconds before the white mark disappears.
 
Peter Trewhitt said:
I agree, any of the MCAS symptoms, other than Anaphylaxis, could arise in ME/CFS for other reasons. Do we have any specific evidence of people with ME, or at least a subgroup, responding to treatment for mast cell activation and/or having signs of mast cell activation on testing?

[added - looking at the medications used for MCAS, potential side effects of antihistamines overlap with ME symptoms, and corticosteroids are generally not something you would want to take unnecessarily.]
Click to expand...

It is confusing and I do not think we have the right idea due to lack of searching finding and research. I have kept Angus or his been kept away from antihistamines but we need to look at those that have not and have had good results or not so good and make a distinction. There are natural foods and other things you can take that help with the histamine degrading which helo with the problem with foods. Sadly from now until summer Angus will have all the normal symptoms of allergies and it is a heavy burden and impacts on his POTS/OI.
 
Hutan said:
I do find this wide acceptance of MCAS being a common co-morbidity of ME/CFS a puzzle. I think it's worth investigating to get to a clearer understanding of what is true or not, because the current vague situation is undoubtedly contributing to people with ME/CFS being seen by many doctors as having flaky ideas.

@Tilly's suggestion of tracking symptoms in a study seems like a good idea.


The video shared above by Tilly noted that to be diagnosed with MCAS you need to have:
  • MCAS symptoms in two or more parts of the body
  • Symptoms improve with MCAS medication
  • Mast cell mediators found at high levels in blood or urine
  • Other diagnoses excluded
I wonder about the blood and urine tests, and whether everyone with an MCAS diagnoses actually has sustained abnormal results?

There also seems to be a suggestion that there are drugs that help, I guess anti-histamines? I think we need blinded trials of the drugs that doctors, it seems particularly US doctors, are prescribing for the combination of ME/CFS and MCAS, with the impact on a wide range of symptoms tracked.

The list of symptoms claimed as relevant by advocates of MCAS is very wide indeed and overlap substantially with those common in ME/CFS.
Click to expand...

Yes they have, to my knowledge there is one place in the UK who follow the correct procedure. Does this help though?

I think before we have trials we need to understand the subgroup where skin, pain and eating is a problem and find which part of the PEM cycle it occurs in because hormones play a part in this and we are not seeing the whole picture. If it is a matter of the warring sign that the body is fighting or adjusting, then we need to find the clues on when and how otherwise we are just throwing darts at a board and missing the mark. Maybe health passports would help or the GPs red flag system for reasonable adjustments? we need to see the pattern and then look at the possibilities.

The immediate problem is safeguarding those who are told they are anxious and really do need treatment for Mast Cell. We need coroners to be aware and on the look out and to make sure that ME and Mast Cell is reported if they are found on the death certificates. Having just one or the other on the death certificate is not acceptable because it gives the wrong data. This fight parents have of explaining, hoping and then loosing their child because no one will open up, clouds out understanding and we need proper investigations? Imagine going through decades fighting to find out you were right and then things are not written as they should be. It takes a core strength to live with and fight this after your child has died.
 
Jonathan Edwards said:
I do not see patients with ME/CFS myself but I have talked many times with people who have seen hundreds of patients in a severe relapse - Caroline Kingdon, Nigel Speight, Willy Weir, Amok Bansal, Binita Kane, and others. I know that inflammation of the skin is not a general feature of PEM because they tell me that if they find a change in a appearance of the skin it is usually an indication of reduced blood flow - cold hands, blue or purplish colour.

Inflammation is defined in terms of a change in tissue due to blood vessel dilatation and permeability. Inflamed means 'like a flame' - red and warm. We are all familiar with it. There is no reasonable possibility that the people I mention have all missed inflamed skin.

Clearly there may be occasional people with ME/CFS who also have rashes. But this is not a general feature of PEM. And there is nothing in any of the diagnostic criteria as far as I know - which bring together the experience of hundreds of physicians - that mentions skin inflammation as associated with PEM.
Click to expand...

Well most of those would look for Mast Cell type reaction with many who can define in individual patients what is needed. Binita Kane has done videos a good video looking at the experience of patients

We have to look and be open to this because it is a very big issue as described in the video I have posted and we need GPs to have this type of knowledge
 
@Tilly, I honestly do have an open mind on this, but I did not find the video convincing at all.

There's a discussion about ways to make a diagnosis. The doctor (Dempsey) says that a negative test means nothing, because mast cells release hundreds of chemicals and it might not be the tryptase or histamine that is the problem. Also that the chemicals degrade and so poor handling by the patient or the lab might affect a sample. Dempsey and Afrin apparently published about this.

So then there's response to treatment as a way of making a diagnosis. But, we know that the placebo effect could be resulting in people thinking they are better for a while. And, there was a lot of talk about how treatments seem to work for a while and then stop working. But, we know that that is also really consistent with a placebo effect. Dempsey said things like, take a rest from the medication and then come back to it later, some patients find that it will help again.

Dempsey said that patients who don't respond to anti-histamines can still have MCAS - they might be responding to one of the other hundreds of chemicals. So, it seems like there is no way to prove someone doesn't have MCAS. And that's a problem, because, unlike ME/CFS, which is just a statement that someone has the characteristic collection of symptoms. MCAS is a statement that people have a particular pathology.

Dempsey said that biopsy samples can be stained for mast cells (CD17), and that increased mast cell numbers can indicate MCAS. But, I suspect the number of MCAS cells can vary with the very particular tissue type, and I don't think more cells would necessarily mean the MCAS cells were doing something problematic.

Binita Kane says testing is very difficult in the UK, so she makes a clinical diagnosis and then sees if there is a response to medication.

Low dose naltrexone was mentioned. I remain skeptical of that while there is no good evidence for it.

It was commented that there is no right diet for everyone - very personalised. It didn't sound as though a low histamine diet was necessarily the answer, again because people might be reacting to any number of molecules.

At 30 mins, there was a question about mast cells and POTS and EDS. It was suggested that mast cells are affecting the autonomic nervous system causing POTS and are in the connective tissue, causing EDS.

Dempsey is making a film (is that the same one that Jen Brea announced that she was making on POTS, MCAS, EDS?). A pilot can be watched at mcasfund.org - sponsored by LDN Research Trust.
Edit - no, the films seems to be different, Jen Brea's one, covering much the same ground but also neurosurgery is said to be 'coming in 2026 (or 7)'.


Binita is really onboard with all of these ideas; she is treating patients along these lines.

There is talk of trauma and resetting the sympathetic system. I really can't see any evidence-based information here. It seems to be speculation presented as knowledge.

Tilly, perhaps you could tell us what makes you believe that MCAS is a useful diagnosis for the people you know?

(some typos corrected)
 
Last edited:
Tilly said:
Well most of those would look for Mast Cell type reaction with many who can define in individual patients what is needed. Binita Kane has done videos a good video looking at the experience of patients
Click to expand...

And this demonstrates the problem. The 'most of those' you mention will believe anything and everything at the same time. The fact that if you mention mast cells they will go off on a tangent about mast cells does not alter the fact that they describe people with severe ME/CFS as having cold hands with poor circulation rather than inflammation.

The video might as well be talking about UFOs. MCAS must exist even if the tests are uninterpretable. Just like UFOs must exist even if the photos are uninterpretable. As Hutan says, we need to see videos like this for what they are - empty of any meaningful evidence.

Nobody here has a closed mind about this. We just do not want people with ME/CFS led up the garden path by doctors who make things up and sell them to people with no evidence.
 
Hutan said:
Dempsey said that biopsy samples can be stained for mast cells (CD17), and that increased mast cell numbers can indicate MCAS.
Click to expand...

Staining for mast cells is a joke. Most tissues are stuffed full of mast cells. With ordinary stains you don't notice them but even with something simple like toluidine blue they show up plastered all over everywhere, but with huge variation density in normal tissue. Counting mast cells is an idiot's game. (I spent much of my MD project staining tissue sections with toluidine blue for other reasons.)

Apart from which Had never heard that MCAS was associated with more mast cells. This is the typical UFO type argument - if one piece of evidence is in doubt you just invent another even if it doesn't make sense with the first.
 
The index case in Afrin's book was a patient with polycythaemia but who didn't have the genetic markers usually associated with polycythaemia vera. He considers mastocytosis and phaeochromocytoma, but neither seems to fit; he finds the reports of "monoclonal mast cell activation syndrome" in the literature. The GI tract appears normal; he comes to rely on GI biopsies stained for CD117 (usually performed to identify gastrointestinal stromal tumours I think) & counting the mast cells in a high-powered field. On the basis of apparently high numbers in an HPF he prescribes imatinib.

And that's how it all got started. The subsequent patients he describes are very heterogeneous. Some probably had rare haematological disorders - one was diagnosed as having pure red-cell aplasia - for others, he over-extrapolates from fatigue and pain and allergy and a few findings or test results that don't mean much in isolation and tries to shoehorn them into his preferred narrative.
 
Jonathan Edwards said:
And this demonstrates the problem. The 'most of those' you mention will believe anything and everything at the same time. The fact that if you mention mast cells they will go off on a tangent about mast cells does not alter the fact that they describe people with severe ME/CFS as having cold hands with poor circulation rather than inflammation.

The video might as well be talking about UFOs. MCAS must exist even if the tests are uninterpretable. Just like UFOs must exist even if the photos are uninterpretable. As Hutan says, we need to see videos like this for what they are - empty of any meaningful evidence.

Nobody here has a closed mind about this. We just do not want people with ME/CFS led up the garden path by doctors who make things up and sell them to people with no evidence.
Click to expand...
 
After a long time of not having much sign of mcas, I apparently now have a pretty bad histamine intolerance. I get red rashes and itchy welts, I have sores on my face, and my digestion goes to absolute heck if I eat high-histamine foods. It's an extremely unwelcome development on the food side of things because I already had fodmap issues, and my diet has become extremely restricted.

I have one theory on the origins of it, which is that i had a vasectomy not too long ago; apparently this can cause autoimmunity sometimes (the result of the severing of the tube is that gametes are floating around inside your body where they're not usually found). I don't really want to get the operation reversed, but if things get worse I might investigat that. The timing might just be coincidental too. Could just be age+me/cfs dealing me an unlucky hand !
 
You must log in or register to reply here.
Back
Top