Mast Cell Activation Syndrome (MCAS) - discussion thread

Thanks, @Daisy. An interesting article. It looks like it's still a relatively new field, with some promising and some less promising clinical trials, and research on genetics and enzymes, but no certainty yet over diagnosis and treatment.

My feeling is that for some people with particularly troubling symptoms that may relate to dietary histamine it may be worth trying a low histamine diet for a few weeks, but not to be too surprised if it makes no difference.
 
Jonathan Edwards said:
This looks like nonsense to me.

I appreciate that it is fair that members should post stuff they think is interesting but as a science-based forum I think this stuff needs to be looked at critically.

From what I have seen so far all this stuff about histamine and diets is nonsense from a science point of view* and not supported by any meaningful evidence. Doctors who say that they 'are getting good results' with treatments by and large are best avoided. Medicine used to work like that before we actually knew whether things worked and had some understanding. It is not acceptable practice now.

*Edit: histamine based reactions to strawberries and seafood are well recognised, as are true allergies but the idea of a 'histamine bucket' makes no sense as far as I can see. This all looks like making money out of gullibility.
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Daisy said:
@Jonathan Edwards

As I said a "histamine bucket" is simply how some patients refer to the way that they manage their symptoms.

The doctor I'm seeing is NHS, although of course others in this field may be preying on vulnerable people, as they do on those with M.E.

I'd much rather try this approach than that of my GP, which is doing nothing in the face of years of distressing symptoms which have a significant effect on already compromised function.

It will be interesting to see if the cystoscopy finds any infection.
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I can see that parts of the video quote research into the hypothesised connection between EDS, Mast cells and bladder problems are problematic in that the sampling methods were not suitable for epidemiological prevalence conclusions to be drawn.

But if you disregard that section and focus on the section about diagnosing and treating people with bladder problems, which I understand is this doctor's specialism, including incontinence, urgency, persistent infections and bladder pain, then he is talking about what seem to be well established evidence on cystoscopy findings and useful drug treatments based on these. Some of these findings include stuff about mast cells which seems to be based on objective evidence, not speculations about histamine diets.

I think it is good that the doctor is taking someone's symptoms seriously and not just dismissing them as part of ME/CFS, and will be doing appropriate bladder investigations.

It's difficult for patients to know whether a doctor who is using their specialist knowledged appropriately may also be stepping into less established territory with the suggestion of trying a low histamine diet. Is it so bad that they recommend at least giving it a try, given that it's not costing the patient money or making money for the doctor, won't do any harm, and that some of the research suggests it can be helpful?
 
Trish said:
I can see that parts of the video quote research into the hypothesised connection between EDS, Mast cells and bladder problems are problematic in that the sampling methods were not suitable for epidemiological prevalence conclusions to be drawn.

But if you disregard that section and focus on the section about diagnosing and treating people with bladder problems, which I understand is this doctor's specialism, including incontinence, urgency, persistent infections and bladder pain, then he is talking about what seem to be well established evidence on cystoscopy findings and useful drug treatments based on these. Some of these findings include stuff about mast cells which seems to be based on objective evidence, not speculations about histamine diets.

I think it is good that the doctor is taking someone's symptoms seriously and not just dismissing them as part of ME/CFS, and will be doing appropriate bladder investigations.

It's difficult for patients to know whether a doctor who is using their specialist knowledged appropriately may also be stepping into less established territory with the suggestion of trying a low histamine diet. Is it so bad that they recommend at least giving it a try, given that it's not costing the patient money or making money for the doctor, won't do any harm, and that some of the research suggests it can be helpful?
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Thank you Trish for this helpful response. Interestingly, I found a paper on Mast Cell issues in my 1999 file of print outs of issues overlapping or involving ME. I will revisit and read to see if it has any relevance to the discussion and post reference if it is.
 
Daisy said:
The doctor I'm seeing is NHS, although of course others in this field may be preying on vulnerable people, as they do on those with M.E.
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Sadly I do not think that working in the NHS is a guarantee of sound practice- we have after all to consider some BPS people! The hEDS story has been propagated from NHS units.

Keeping away from certain foods may do no great harm - except that it may distract people from very real pathology that needs urgent attention - sadly the situation for someone I knew well who are no longer with us.

Trish said:
It looks like it's still a relatively new field, with some promising and some less promising clinical trials, and research on genetics and enzymes, but no certainty yet over diagnosis and treatment.
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The field has been going for at least four decades - it was around when I was first appointed as consultant. The question is why there is still so little evidence.

Trish said:
But if you disregard that section and focus on the section about diagnosing and treating people with bladder problems, which I understand is this doctor's specialism, including incontinence, urgency, persistent infections and bladder pain, then he is talking about what seem to be well established evidence on cystoscopy findings and useful drug treatments based on these. Some of these findings include stuff about mast cells which seems to be based on objective evidence, not speculations about histamine diets.
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I find it hard to disregard the fact that someone is prepared to pass on a mumbo-jumbo story. Critical people do not do that. So there is every reason to think the rest is just as mumbo-jumbo I am afraid. There are always bits of physiology to cling on to but whether there are really relevant is often hard to tell. I have now watched the video and wonder if there was anything that would really pass the S4ME test?

I agree that taking people seriously is essential but in the end taking people really seriously boils down to getting proper trial-based evidence. Why sell people stuff that has not really been shown to work?

I may be being too critical but to be honest anyone who starts off with all the mumbo-jumbo stuff is pretty unlikely to have done their homework properly.
 
Jonathan Edwards said:
*Edit: histamine based reactions to strawberries and seafood are well recognised, as are true allergies but the idea of a 'histamine bucket' makes no sense as far as I can see. This all looks like making money out of gullibility.
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I don't for a moment believe that there's such a thing as a histamine bucket.

One thing I have noticed over the years though is that sometimes I can eat a small one off portion of certain food and get away with it and at others I can't. It seems to depend on what else I've eaten over the previous day or so.

So once a low level reaction is triggered, I seem to become more likely to react to foods that I can sometimes get away with.

I daresay it is possible that a reaction might happen but be mild enough not to trigger obvious symptoms and then you add in another dose of whatever you're reactiing to and you react more & develop symptoms.

It is also extremely easy to put a reaction down to the wrong food or ingredient.

While a low level reaction might not be life threatening they can make you feel very miserable, raise your HR a bit, cause headaches, eczema, dodgy tummy etc. If that's happening it adds to the complications of managing life with ME and is yet another factor that reduces quality of life.

It's a balancing act between the effort involved in avoiding certain ingredients or strictly controlling intake & the extra vigilance and effort involved in food prep vs dealing with the aftereffects.

I think unless a diet is making a worthwhile difference most people will eventually creep back to their old ways.

Edit - cross posted with JE -
Keeping away from certain foods may do no great harm - except that it may distract people from very real pathology that needs urgent attention - sadly the situation for someone I knew well who are no longer with us.
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I'm sorry to hear that. I would agree if diet alone isn't helping then some docs will blame the client for not being strict enough with the diet when there could be some other treatable pathology at play.
 
I listened to the video. It appears to be the same old hEDS/MCAS pseudoscience from start to finish. Counting mast cells is a neat way to get phoney results. I used to count cells in sections and know all the tricks of the trade. There does not appear to be a single piece of reliable information in the video.
 
Jonathan Edwards said:
Keeping away from certain foods may do no great harm - except that it may distract people from very real pathology that needs urgent attention - sadly the situation for someone I knew well who are no longer with us.
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I agree it's completely wrong and irresponsible if dietary advice is given as a substitute for proper investigation of pathology, and am very sorry to hear this happened to someone you knew. Such incompetence is inexcusable.

Jonathan Edwards said:
he field has been going for at least four decades - it was around when I was first appointed as consultant. The question is why there is still so little evidence.
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Ha, yes, I'm getting old. I tend to forget the 1980's are 40 years ago!
 

Actually downloaded in 2005, not 1999 - I too in my retirement phase am getting too old for all this......!
It is very interesting and very well referenced.
Food for thought?

https://pubmed.ncbi.nlm.nih.gov/16282830/

Mast cells, antidepressants and chronic fatigue syndrome
Theoharides, Theoharis C.
Tufts University, Boston, MA, United States




https://grantome.com/grant/NIH/R21-AA016701-02

Chronic fatigue syndrome (CFS) is characterized by fatigue, malaise, sleep and autonomic disturbances; it is considered a neuroimmune disorder with dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis, precipitated by stress and associated with high disability. CFS often occurs with comorbid diseases such as fibromyalgia, irritable bowel syndrome (IBS), interstitial cystitis (IC) and migraines, all of which also worsen by stress. There are no reliable animal models for CFS. Mast cells have emerged as a major regulator of neuroimmune endocrine processes affected by stress and have been implicated in all comorbid diseases associated with CFS. We have shown that: (a) mast cells have functional associations with nerve endings; (b) acute stress activates mast cells, an action blocked by pretreatment with corticotropin-releasing hormone (CRH) neutralizing antiserum, (c) stress increases blood-brain-barrier (BBB) permeability, which is inhibited by the CRH-receptor-1 (CRH-R1) antagonist Antalarmin and does not develop in mast cell deficient W/W mice, (d) human mast cells express CRH receptors, activation of which leads to selective release of vascular endothelial growth factor (VEGF), (e) some of the stimulatory effects of CRH on mast cells are mediated by neurotensin (NT), which has been shown to regulate the HPA axis. Tricyclic antidepressants are helpful in CFS and in the other comorbid diseases, but this mechanism of action is unknown. Our preliminary results show that the tricyclic antidepressant amitriptyline can inhibit rat mast cell secretion and intracellular calcium ion levels. Hypothesis: CRH, or the structurally related urocortin (Ucn), secreted by stress activates diencephalic mast cells, either alone or together with other neuropeptides such as NT leading to release of molecules that contribute to the central pathogenesis of CFS, and secretion of which can be inhibited by tricyclic antidepressants.
 
https://grantome.com/grant/NIH/R01-NS071361-03

Public Health Relevance
Chronic Fatigue Syndrome (CFS) is neuroimmunoendocrine disorder with no definite pathogenesis or curative therapy presently available. Recent evidence suggests that CFS may be related to activation of a unique immune cell, the mast cell, which could disrupt gut-blood-brain barrier and lead to brain inflammation and release of fatigue causing molecules. The proposed research is expected to advance our understanding of how activation of brain mast cells can contribute to inflammation and CFS, as well as to the development of novel and effective treatments.
 
What I find odd is that there are two other females I have known for over 30 years. Both of them struggle with all sorts of allergies much worse than mine. They're probably out of action for a day or two every month as an absolute minimum because of this.

Neither of them has ME.
 
Suffolkres said:
Mast cells have emerged as a major regulator of neuroimmune endocrine processes affected by stress and have been implicated in all comorbid diseases associated with CFS.
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But this is just made up. It is not based on anything meaningful.
I am afraid I get pretty annoyed with my academic colleagues when they produce this sort of stuff.
It is designed for marketing. I don't think we had this sort of empty rhetoric before 1990.
 
Invisible Woman said:
What I find odd is that there are two other females I have known for over 30 years. Both of them struggle with all sorts of allergies much worse than mine. They're probably out of action for a day or two every month as an absolute minimum because of this.

Neither of them has ME.
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A good point. Mast cell activation as part of allergy is well documented ted in every A/E department in the world. But the great majority of these people (maybe 99.5%) do not have symptoms of ME. So all that stuff about mast cells being important mediators of neuroimmune stuff in ME does not seem to make much sense.

Where are the actual figures from population studies that show mast cell activation symptoms are more common in PWME? If I remember rightly the only published study says there is no association or with EDS either.
 
Jonathan Edwards said:
Mast cell activation as part of allergy is well documented
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Allergy is found in a high % of people with a diagnosis of ME and CFS. No sure if this is comorbidity or a stand alone difficulty.
(Husband and son both with CCC diagnosis of ME also are prone to allergic symptoms, eczema asthma hives dermatitis - atopic, and have dietary and other intolerance and sensitivities. (alcohol, medications etc))

So, as stated https://me-pedia.org/wiki/Comorbidities_of_Myalgic_Encephalomyelitis
'Canadian Consensus Criteria
The Canadian Consensus Criteria recognizes the following comorbidities for ME/CFS: fibromyalgia, myofascial pain syndrome (MPS), temporomandibular joint syndrome (TMJ), irritable bowel syndrome (IBS), interstitial cystitis, irritable bladder syndrome, Raynaud's phenomenon, prolapsed mitral valve, depression, migraine, allergies, multiple chemical sensitivities (MCS), Hashimoto's thyroiditis, and sicca syndrome (Sjögren's syndrome).[2]

Preceding conditions
Conditions that begin many years before ME/CFS but then become associated with it, such as irritable bowel syndrome, migraines and depression, are regarded as more loosely associated. ME/CFS and fibromyalgia are regarded by the Canadian Consensus Criteria as often closely connected overlapping syndromes.[2]

International Consensus Criteria
The primer for the International Consensus Criteria for myalgic encephalomyelitis, which is based on the earlier Canadian Consensus Criteria gives the following comorbidities: myofascial pain syndrome, temporomandibular joint syndrome (TMJ), interstitial cystitis, Raynaud's phenomenon, prolapsed mitral valve, irritable bladder syndrome, Hashimoto's thyroiditis, sicca syndrome (Sjögren's syndrome), secondary depression, allergies, and multiple chemical sensitivities. Fibromyalgia (FMS) is considered "an overlap condition.'

The above is why we have argued that NICE must address co morbidity. Maybe allergy/mast cell activation and symptoms are all part and parcel of this?
 
Suffolkres said:
The above is why we have argued that NICE must address co morbidity. Maybe allergy/mast cell activation and symptoms are all part and parcel of this?
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Sorry but we cannot expect to ask NICE to change things unless there is reliable evidence. The business about allergy being common in ME is everywhere in informal descriptions but I have yet to see any facts. I am not aware that the ME Biobank cohort was documented as having more allergy for instance and it did not find hypermobility.

The CCC is not too bad but the ICC is full of all sorts of made up stuff, which is why hardly any researchers I know take it seriously.
 
It would be good to see some proper epidemiological studies done on ME/CFS comorbidities to sort out this confusion. Allergies, food and chemical sensitivities, migraines, IBS, hypermobile joints etc. are all so common it's inevitable that lots of pwME will have some of these as well.
 
https://www.meresearch.org.uk/milk-intolerance/

Milk( &) gluten ( anecdotally) an issue for my two men.

'Food intolerances also have a significant role in ME/CFS. Sensitivity to foodstuffs is one of the possible “immune, gastro-intestinal & genitourinary impairments” used for diagnosis (see the 2011 ICC definition), and many individual patients say that they benefit from avoiding certain foods. Gluten is a good example, and we know from emails and phone calls to ME Research UK that excluding gluten from the diet improves some patients’ symptoms. These symptoms not only include gut discomfort (abdominal pain, bloating etc.) as might be expected but more systemic manifestations such as brain fog, headache, joint and muscle pain. Now, a new report in the August 2016 issue of Acta Pediatrica (read more) suggests that milk protein may also be contributing to symptoms, at least in some ME/CFS patients.'
 
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