Mast Cell Activation Syndrome (MCAS) - discussion thread

[Jonathan Edwards]

Did you use Maitland-A? I used "Anne Maitland" and got 17ish?

I tried Anne Maitland Mast Cell - same 9.

 

[Jonathan Edwards]

Naturally it isn't anybodies responsibility to do this.

I think if somone comes on the forum and claims that a concept like MCAS has been 'repeatedly validated' or some such, and then can produce nothing to back that up at least has a responsibility to admit they had no basis for the original claim. We are dealing with what is almost certainly medical misinformation used by physicians for personal profit and kudos that affects people's lives - even inducing them to have dangerous neck operations. I think there is a very real responsibility here.

 

[EndME]

I think if somone comes on the forum and claims that a concept like MCAS has been 'repeatedly validated' or some such, and then can produce nothing to back that up at least has a responsibility to admit they had no basis for the original claim. We are dealing with what is almost certainly medical misinformation used by physicians for personal profit and kudos that affects people's lives - even inducing them to have dangerous neck operations. I think there is a very real responsibility here.

Possibly, but I feel the dynamics of the situation are a bit more complex when a patient joins a forum, let's people know with what they have been diagnosed with and the first thing they get to hear is that the diagnosis is nonsense and that by extension they have a responsibility to show that it is not by providing a paper that is of high quality on the subject, which is what my reference on "responsibility" was about.

I'm reminded of a previous discussion with @dave30th (see here).

 

[Jonathan Edwards]

by extension they have a responsibility to show that it is not by providing a paper that is of high quality on the subject, which is what my reference on "responsibility" was about.

It wasn't just by extension if I remember rightly. It was specifically i response to comments including a claim that the syndrome had been repeatedly validated and also a number of snide comments about intellectual bias, ignorance and inappropriate philosophical stance (positivism, anti-frog, why don't you go and read...). I appreciate that it is hard for people joining the forum to find that what they think is their diagnosis is not recognised by others but there are ways of going about things.

I am sorry if I sound truculent but I am getting ever more angry about just how much of a mess the ME/CFS world is and how much that is contributed to by people who see themselves as advocates but are constantly bringing up make-believe memes from fringe physicians that ensure that nobody with ME/CFS gets treated seriously anywhere useful. I seem to be the only physician in the UK who sees the problem and wants to do something about it. Having spent another month trying to get over yet another Covid* bout myself I admit to being fairly grumpy.

*Which of course was also the fault of physicain colleagues playing with viruses, not to mention the concept of 'multidisciplinary teams' and the list goes on...

 

[Clio]

Food intolerance/allergy-like symptoms can be a consequence of viral infections (like norovirus, not just covid), but whether it's part of the same thing as ME/CFS or something else remains to be shown (just like with POTS).

I don't think many patients are super dependent on a certain pathophysiology (besides a general urge of "see my illness is biological" which is caused by the prevalence of BPS ideology and thus is understandable to want to be believed).

It would be nice to know more but a temporary imperfect word to talk about it would also be nice (just like ME was imperfect), perhaps something like MCAS/CIS (Chronic Intolerance Syndrome)

I do not really care what the name ends up being but I would like something better than "covid induced cromolym sodium dependence". After my infection I became intolerant to every single food and not just with GI symptoms. And not just food but almost all fragrances as well. It got so bad I almost died of malnourished and was TPN dependent for half a year. Then I randomly tried cromolyn sodium (quite literally because of the MCAS overhyped pseudoscience) and it helped me eat enough food by myself to survive - and my then partner even helped me to single-blind test it, since cromolyn has no taste nor obvious effects on me. It was clear from the results that cromolyn sodium helps me (results for anyone else may vary).

 

[V.R.T.]

I have allergic type symptoms too since becoming severe/getting covid, and hands going bright red after I eat high histamine foods like curry. I decided to take it seriously after two occasions where I ate a heavily fermented food (kimchi on one occasion and yellow bean paste on another) and had intense symptoms.

After I was put on a low histamine diet a year ago I noticed a lot of symptoms decreased significantly, but the diet is utterly miserable and hard for my carers to stick to. I have tried H1 antihistamines twice, ceterzine made my brain fog worse and a recent trial of fexofenadine coincided with a period of frightening crashes. I have a backlog of famotidine I keep meaning to try.

I really want to reintroduce normal foods but every time I try I crash and feel unwell. This may be correlation not causation though, as it is miserably easy for me to trigger PEM.

I know someone with ME/LC who suffers terribly with MCAS/allergies, and have heard a lot of similar stories in support groups.

I do sometimes think the MCAS clincal category is too broad (Afrin claims it can cause everything under the sun), but imo there is definitely something happening here that sometimes accompanies ME/CFS and worsens with PEM.

Attached two more extreme examples of said swelling and redness in hands.

Edit: Since covid/becoming severe I also find that black pepper, which I used to love, now burns my mouth, and if a crumb of it stays on my tongue it almost has a numbing effect. so i had to stop eating it.

For the record the other week I ate a high histamine meal that wasn't spicy and the same thing happened.

But I've also had it happen a few times recently when Ive stuck to diet but am in PEM.

 

[Sasha]

I am getting ever more angry about just how much of a mess the ME/CFS world is and how much that is contributed to by people who see themselves as advocates but are constantly bringing up make-believe memes from fringe physicians that ensure that nobody with ME/CFS gets treated seriously anywhere useful.

S4ME doesn't have a big enough megaphone. The charities need to be persuaded of this and to be pushing this line.

I seem to be the only physician in the UK who sees the problem and wants to do something about it.

Thank you for your service.

Having spent another month trying to get over yet another Covid* bout myself I admit to being fairly grumpy.

Hope you get better soon. Can't believe that so little effort has gone into mitigation of Covid.

 

[Jonathan Edwards]

I don't think many patients are super dependent on a certain pathophysiology (besides a general urge of "see my illness is biological" which is caused by the prevalence of BPS ideology and thus is understandable to want to be believed).

It would be nice to know more but a temporary imperfect word to talk about it would also be nice (just like ME was imperfect), perhaps something like MCAS/CIS (Chronic Intolerance Syndrome)

The problem is that that very desire to have the illness seen as biological plays right into the hands of the BPS crowd. To the extent that EDS has now been adopted by gastroenterologists as an especially 'functional' disorder - in other words entirely imaginary but we must say it is real, or whatever double think they prefer.

MCAS may sound 'biological' but to a physician it just sounds pseudoscience. And people with ME/CFS are deliberately being excluded from a physician led service because they keep insisting they have these pseudo-diseases. As soon as a mouth is opened and MCAS and EDS are mentioned you are in the functional pigeonhole where feeding support is not good management.

If we think someone has food intolerance we can just call it food intolerance. Adding a special syndrome is where the make-believe comes in. And if it is part of ME/CFS it doesn't need another syndrome because it is already part of one with a meaningful definition. It is vanishingly unlikely that there are so many people with four unrelated syndromes together (MCAS/POTS/EDS/ME/CFS) when as far as we know there is no biological or epidemiological evidence for a link. Yet so many people have been told they have all these diagnoses.

I may be misguided but it seems that in the UK it is me that has the job of trying to persuade physicians to begin taking ME/CFS seriously again. I have managed to get lab researchers interested - that was remarkably easy. There was no hesitation. But persuading physicians is going to need a very persistent and well organised campaign. As long as advocacy groups keep talking in pseudo-biology terms I think I am probably scuppered.

ME/CFS is a real biological problem.
Food intolerance is a real problem. It probably involves mast cells somewhere along the line but then pretty much any tissue reaction does so calling it a mast cell problem just muddles things.
EDS is a real biological problem but hEDS is not - it has no useful meaning.

The patient community needs to dig itself out of this hole if we are to get any clinical service. To some degree it has, but judging by what I have heard in terms of responses to our Fact Sheet 3 there are still a lot of people out there who cannot see the wood for the trees.

 

[Jonathan Edwards]

I know someone with ME/LC who suffers terribly with MCAS/allergies, and have heard a lot of similar stories in support groups.

But if you look at the stories carefully it is all a muddle. Reacting to histamine in food is not the same as mast cells producing histamine. Curry produces vasoactive changes because of things like capsaicin. Normal guts react to curry, often with watering eyes and sweating as well.

And the only studies we have that looked at this without coming from a clinic already committed to believing in a link seem to show no particular relation with allergy, which is common enough anyway.

A relation to mast cell events could be tested very easily with double blind trials of inhibitors and other such things but these are never done. Personal observations are no good to the community. There is always gross reporting bias, particularly on social media.

 

[V.R.T.]

Reacting to histamine in food is not the same as mast cells producing histamine.

I never said it was.

I agree there are big problems with the MCAS label. I believe Afrin even claims it causes autism. But there are a huge amount of pwME and LC with new onset allergy type symptoms triggered by a range of things. And many of them manage this with antihistamines. Some of them it is mild and some are very debilitated by this.

I think it's like the POTS/OI debate. It would be a mistake to ignore this completely because of issues with the MCAS label etc.

And people with ME/CFS are deliberately being excluded from a physician led service because they keep insisting they have these pseudo-diseases.

I also just want to ask, would your collegues refuse to treat all people with cancer because some of them believe it can be treated with a raw food diet? I really think this is a poor excuse for prejudicial treatment.

You are right that it isn't helping matters at all but it is not the main reason for us being treated this way. BPS ideas of illness and a cruel medical culture labelling people with syptoms we dont understand hypocondriacs who are undeserving of care is the root cause.

 

[Utsikt]

You are right that it isn't helping matters at all but it is not the main reason for us being treated this way.

Not that the BPS people are treating us this way, but it might be a key reason for why non-BPS people don’t want to touch us. They might be happy thinking ME/CFS is real, but can’t be bothered with all of the other stuff.

Of course that’s their fault for abandoning their duties, but from a strategic standpoint it might still be warranted to ask ourselves and others to stop making the climb even steeper.

 

[V.R.T.]

They might be happy thinking ME/CFS is real, but can’t be bothered with all of the other stuff.

Well why don't they just do exactly that? Deal with ME/CFS and not the other stuff? Plenty of people with other serious chronic illnesses have woo beliefs. They aren't denied basic care and treatment and research.

 

[Jonathan Edwards]

there are a huge amount of pwME and LC with new onset allergy type symptoms triggered by a range of things.

But there are no data. Why not? Allergy-type symptoms can cover a vast range of things. Yes mast cells will be in there somewhere in all of them but that doesn't make them even allergy (and MCAS is supposed not be allergy just to confuse things further).

When I started learning about ME/CFS I accepted the common view that it was linked to allergy but everything I have seen over the ten years now indicates that there are no useful positive data and some quite reasonable negative data. Allergies tend to be very specific - nuts seem to be the best documented. A lot of other intolerances like milk, gluten, seafood are other things but can also be very specific. The broad spectrum intolerance commonly reported by people with ME/CFS does not sound like allergy or a primary mast cell thing at all to me. It sounds much more like part of a more general intolerance of stimuli that might have a basis in sensory neurons (where that CA10 gene sits).

 

[Utsikt]

Well why don't they just do exactly that? Deal with ME/CFS and not the other stuff? Plenty of people with other serious chronic illnesses have woo beliefs. They aren't denied basic care and treatment and research.

I don’t know. But I do think plenty of people get worse care if they give the doctors a lot of hassle. Maybe ME/CFS are in a particularly bad spot because there are no treatments, so all they are left with are the bogus diagnoses, but they can’t do anything for those either.

 

[Jonathan Edwards]

I also just want to ask, would your collegues refuse to treat all people with cancer because some of them believe it can be treated with a raw food diet? I really think this is a poor excuse for prejudicial treatment.

Of course it is an entirely illegitimate excuse but it is what we are up against!! That is the point.

You are right that it isn't helping matters at all but it is not the main reason for us being treated this way. BPS ideas of illness and a cruel medical culture labelling people with syptoms we dont understand hypocondriacs who are undeserving of care is the root cause.

That is not my experience. People with ME/CFS were explicitly banned from UCLH rheumatology on the grounds that they constantly claimed to have hEDS or somesuch and wanted to be treated on that basis. The shift from fifteen years ago when Finlay and Bansal were still seeing patients to today has been heavily influenced by doctors being fed up with patients bringing pseudoscience.

And I don't think the BPS people really made much difference. I think they were opportunists, symptomatic of a lazy attitude across medicine that was happy to believe the popular prejudice that ME/CFS was just hypochondria. In my department nobody had heard of the BPS people much. They had never heard of the PACE trial. The hypochondriac story goes back muc further. I remember it well in the 1980s and even then it was fuelled by people claiming to have 'myalgic encephalomyelitis' when that had turned out to be a non-disease.

 

[V.R.T.]

People with ME/CFS were explicitly banned from UCLH rheumatology on the grounds that they constantly claimed to have hEDS or somesuch and wanted to be treated on that basis.

I still think this is outrageous.

symptomatic of a lazy attitude across medicine that was happy to believe the popular prejudice that ME/CFS was just hypochondria. In my department nobody had heard of the BPS people much. They had never heard of the PACE trial. The hypochondriac story goes back muc further.

That was the point I was trying to make. Psychobehavioural views stemming from Victorian era conceptions of hysteria etc would have been better.

 

[V.R.T.]

The broad spectrum intolerance commonly reported by people with ME/CFS does not sound like allergy or a primary mast cell thing at all to me. It sounds much more like part of a more general intolerance of stimuli that might have a basis in sensory neurons (where that CA10 gene sits).

That's an interesting idea.

 

[Jonathan Edwards]

Well why don't they just do exactly that? Deal with ME/CFS and not the other stuff? Plenty of people with other serious chronic illnesses have woo beliefs.

But not to the same degree. They do not come claiming to have four diseases. They do not describe all their symptoms in terms of memes they have picked up from private physicians or social media.

I had some first hand experience of this briefly around 2000 when the 'hypermobility clinic' closed down. I had been asked to take it over because I had been involved in starting up the orginal clinic at another hospital 20 years earlier. I refused because I did not consider hypermobility needed a special clinic. The claimed link with widespread pain and fatigue is pretty baseless.

The clinic got given to someone else but for a while the referrals were sent to all consultants, and maybe me particularly because of my past association. I had a string of patients all of whom knew exactly what their diagnosis was because a physio had told them and it was in line with the view of the great expert at UCl (who I had to tell them was not me). When I tried to explain that I didn't think the analysis held water some got very indignant. Everything was couched in terms of the belief in a process for which we had no evidence. People with cancer and woo ideas may sometimes be like that but they are very much a minority.

I often wonder whether these were a different lot of people from those on this forum - maybe with an entirely different sort of problem. My experience was also no doubt skewed by taking the place of a great expert, with referrals from across the country. But I think there is a difference. Cancer advocacy groups do not talk mumbo jumbo like 'complex multisystemic disease' with 'comorbidities x, y, z'. There is a specific problem. It may well reflect the absence of treatment but there is an absence of treatment for quite a few other diseases. Maybe mostly it reflects an absence of biological knowledge. And to get that knowledge we need physicians to look after patients long term and to get that we need to find the path of least resistance.

 

[Clio]

The problem is that that very desire to have the illness seen as biological plays right into the hands of the BPS crowd. [...]

This is an amazing response and I especially want to highlight the point about how often people claim to have the same number of syndromes together, it is possible we're just dealing with ME/CFS all along.

It's a shame that only PEM is the extremely specific symptom so we can only define a syndrome including it without getting into non-specific "pain and fatigue and vague intolerances" camps.

Still, I would have liked there to be a trial looking at cromolyn sodium for food intolerance in this population, AFAIK there hasn't been one.

 

[Sasha]

The patient community needs to dig itself out of this hole if we are to get any clinical service. To some degree it has, but judging by what I have heard in terms of responses to our Fact Sheet 3 there are still a lot of people out there who cannot see the wood for the trees.

I share the outrage that doctors are failing to care for me and other PwME because they don't like the theories that some other patients hold about their ilness - especially when those patients have been told those theories by other doctors.

But if the beliefs of a substantial fraction of the patient community are a big part of the problem, how do we tackle that? Our Fact Sheet 3 was deliberately aimed at health professionals. Is there something we could produce aimed at PwME about this?

What you're saying on this thread (and similar things that you've said on other threads) will be a real eye-opener for most PwME - it's a medical insider's view that we can't normally see. How can we get this across?