Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

Tilly said:
We are at the stage of chickens
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But this is exactly the point @Tilly. We know very little. (Although what we do know provides fairly good evidence for there being no relation between 'MCAS' or 'hEDS' and ME/CFS. It is not that nobody has looked. They have, and nothing was found.)

And if we know very little it is dangerous for advocates to repeat pseudoscientific stories from private physicians if they do not themselves have the scientific background to know they are valid.

As I have said before, I see serious harms that can come of this. If carers share bogus information on social media it may have a seriously negative impact on children and young people in their care. This sort of bogus information plays into the hands of social services inappropriately taking children into care. Whole families may be destroyed as a result. It provides the basis for claims of FII.

What we are discussing has nothing to do with the management of vitamin D deficiency or Coeliac disease or allergic reactions. Those are straightforward medical matters about which we have reliable information. It is about claims of co-morbidities for ME/CFS for which we have no evidence.
 
Tilly said:
There is a lot more but is you go way back or list those that treat and talk about Mast cell
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I managed to read all those citations, @Tilly. They are a random mixture of all sorts of arguments linking these things together in various ways but taken together they provide not a shred of evidence for any link between ME/CFS and "MCAS". If anything they are about quite different links with other things. Science cannot be done by just randomly throwing a whole lot of stories into a bag and saying they prove something.
 
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Tilly said:
As far as Mast Cell and vitamin deficiency there is a lot of work but not joined up and most choric long term conditions such a diabetes, Lupus and MS have associations to vit deficiency and mast cell so starting with the old research
pubmed.ncbi.nlm.nih.gov

Serum tryptase measured with B12 and G5 antibody-based immunoassays in mastocytosis patients and its relation to histamine turnover - PubMed

Serum tryptase was measured with the B12 and G5 antibody-based immunoassays in 25 adult patients with mastocytosis and in 18 controls. Twelve patients had uncomplicated cutaneous mastocytosis (urticaria pigmentosa) and 13 had urticaria pigmentosa with systemic symptoms. Tryptase levels were...
pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov
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Some information found trough a web search about the B12 antibody which this article seems to be about:

en.wikipedia.org

HLA-B12 - Wikipedia

en.wikipedia.org en.wikipedia.org

en.wikipedia.org

Envelope glycoprotein GP120 - Wikipedia

en.wikipedia.org en.wikipedia.org


This text seems to support the fact that the linked article really is about the antibody and not vitamin:

The TT test relies on 2 monoclonal antibodies with different specificities: “B12” for capture and “G4” for detection, the latter in its Fab’2 form, “B12” also able to dissociate tryptase tetramers and maintain their monomeric status.
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@Tilly: It seems that to support your argument you have posted links to things you have not really looked at and understood.
 
For the UK folks who are concerned about this, I’m curious if gastroparesis is also on your radar. My husband is a physician in the US, and we are becoming very suspicious that there is a large number of questionable gastroparesis diagnoses in the same population that this thread is about.

(It is not that hard to end up with a false positive on a motility test, for those who don’t know.)

My husband is well informed about ME, and most of the patients he sees with the constellation of diagnoses mentioned in this thread definitely do not have it. It seems the primary issue for a lot of them is a GI one. I hesitate to say this because I’m afraid of being misinterpreted, but a good number of them really do have problems that are psychiatric in origin, such as lightheadedness from an eating disorder that they insist on explaining away as POTS, despite a normal tilt table. It’s pretty clear to me that doctors are seeing this type of patient fairly often now and lumping ME patients with these extra diagnoses in with them. In our area of the US, patients getting these diagnoses to explain ME-related symptoms would be a small minority of the people with these diagnoses, and most doctors are totally unaware of them.

[Edited for clarity]
 
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Verity said:
such as lightheadedness from an eating disorder that they insist on explaining away as POTS, despite a normal tilt table
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Lots of people with orthostatic intolerance have below 30 HR increase in tilt tables, so a «normal» response might still be OI.

I have no idea about the gastroparesis, but the symptoms seem generic enough to be a candidate for misdiagnosis or wrong self-diagnosis.
 
Verity said:
For the UK folks who are concerned about this, I’m curious if gastroparesis is also on your radar. My husband is a physician in the US, and we are becoming very suspicious that there is a large number of questionable gastroparesis diagnoses in the same population that this thread is about.

(It is not that hard to end up with a false positive on a motility test, for those who don’t know.)

My husband is well informed about ME, and most of the patients he sees with the constellation of diagnoses mentioned in this thread definitely do not have it. It seems the primary issue for a lot of them is a GI one. I hesitate to say this because I’m afraid of being misinterpreted, but a good number of them really do have problems that are psychiatric in origin, such as lightheadedness from an eating disorder that they insist on explaining away as POTS, despite a normal tilt table. It’s pretty clear to me that doctors are seeing this type of patient fairly often now and lumping ME patients with these extra diagnoses in with them. In our area of the US, patients getting these diagnoses to explain ME-related symptoms would be a small minority of the people with these diagnoses, and most doctors are totally unaware of them.

[Edited for clarity]
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This is of particular concern, given the problems that those with very severe ME/CFS and feeding problems have already getting appropriate medical management. If there is over diagnosis/misdiagnosis of gastroparesis it is going to make the life of those needing non-oral feeding even more of a nightmare.
 
Utsikt said:
Lots of people with orthostatic intolerance have below 30 HR increase in tilt tables, so a «normal» response might still be OI.

I have no idea about the gastroparesis, but the symptoms seem generic enough to be a candidate for misdiagnosis or wrong self-diagnosis.
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I know, and so does my husband because I’m one of them, actually. There was nothing to actually suggest POTS in this case. She was just stuck on that explanation. It happens.

I know ME patients tend to err on the side of assuming someone’s problem is not psychiatric, but honestly in some cases they get in the hospital it’s more straightforward than you’d think. Another person I remember who claimed some of this constellation of diagnoses had 100% confirmed facticious disorder (caught with 24/7 monitoring in the hospital) that was causing the symptoms. This sort of thing really does happen sometimes, and it is affecting how doctors see these patients, even though it shouldn’t.

Edit: The reason I mention this is I’m concerned we can’t effectively address this problem if we don’t have the full picture of why doctors are reacting poorly to these patients.
 
Yes. From what I've been able to discern there are a few (mostly private) gastroenterologists & neurogastroenterologists in the UK in what might be called the EDS-III orbit who do seem to give out questionable gastroparesis diagnoses to patients who might ordinarily be diagnosed with e.g. IBS - or, as you say, gastrointestinal symptoms attributable to a psychiatric disorder - if they had been seen by a more conventional gastroenterologist.

Also, while far less common, a few members of this patient population seem to end up with even more spurious diagnoses of abdominal vascular compression syndromes (SMA syndrome, MALS, ...) - another area, like the "CCI" that isn't really CCI, where there are quack surgeons operating.
 
I find it rather amusing that there is this assumption by some that ME/CFS patients want to claim they have something called MCAS. I am not sure I had even heard of the term but somehow my GP (yes NHS GP) persuaded me that should see a nutritionist who specialised in this. Not having much to lose (it being in house too, refusal might have been taken rather dimly) I went along with trying a slightly restrictive diet and taking a couple of types of antihistamines.

After a few months I couldn't say I noticed the slightest difference. I wasn't especially surprised, I had no particular expectations. So I dropped the dietary restrictions, and didn't ask for repeats of the antihistamines. Can't say I really regret trying, but the suggestion certainly did not come from myself.
 
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Verity said:
I hesitate to say this because I’m afraid of being misinterpreted, but a good number of them really do have problems that are psychiatric in origin, such as lightheadedness from an eating disorder that they insist on explaining away as POTS, despite a normal tilt table. It’s pretty clear to me that doctors are seeing this type of patient fairly often now and lumping ME patients with these extra diagnoses in with them. In our area of the US, patients getting these diagnoses to explain ME-related symptoms would be a small minority of the people with these diagnoses, and most doctors are totally unaware of them.
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I think this is a dangerous position to take. You seem to be suggesting that you (or others) can tell which patients' GI symptoms have a physical basis and which are produced by the mind. I don't think that is a useful distinction but even if it was I have no confidence that doctors can correctly attribute the cause of symptoms in this way. We don't know what process is causing these symptoms, and so suggesting that some should be treated differently because they are placed in a questionable group I don't think is helpful. Trying to attribute symptoms to unknown causes is why ME/CFS has been considered psychiatric in the past (and for many still today).

The solution is to treat every symptom as just as real because it is (assuming the symptoms are not being lied about). The only difference between someone who can't eat for "psychiatric" reasons and because they have some "physical" disease, is that you assume the "psychiatric" case can be solved with psychiatric help and the physical case with some other treatment. If they experience the same symptoms both are just as unable to eat and should have access to the same feeding assistance should it be required. Doctors react poorly to patients because they don't know what it is like to experience their patients symptoms. If they understood that symptoms are just as real regardless whether we know why they are occurring, people would be treated in the way they deserve to be.
 
Eddie said:
You seem to be suggesting that you (or others) can tell which patients' GI symptoms have a physical basis and which are produced by the mind.
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Sorry, I think I was unclear. The patients who have GI complaints and the patients who have clear psychiatric problems are not the same patients. My husband explicitly said the medical complaint when someone presents with hEDS/MCAS/POTS is usually GI and probably legitimate, though not likely caused by the claimed diagnosis.

The psychiatric patients are not “somaticizing” or whatever. They’re relatively straightforward psych patients overall. Sometimes the psych issue is directly causing the medical complaint via behavioral issues, and sometimes past providers have ignored obvious psych issues because of the diagnoses mentioned in this thread, and that’s not good practice. One patient who I remember could have died because admin and one doctor were taken in by a questionable diagnosis that could explain her symptoms but clearly wasn’t relevant after 24/7 monitoring (forced by doctors who were suspicious and did not agree with admin’s acceptance of her diagnoses). That’s a real problem for that sort of patient, as much of a problem as the ones we face being dismissed because of these diagnoses. Patients with primary psych disorders should not have to suffer the consequences of doctors overdiagnosing these disorders any more than we should. The consequences can literally be fatal. This is bad for all of us, and it doesn’t help us to ignore that psych is affected.
 
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I think I should clarify part of why I brought up psych. I think it could backfire massively if—in trying to address this problem with questionable diagnoses—ME patients end up suggesting to doctors that their obvious psych patients with these diagnoses aren’t psych patients. They will be even less inclined to believe us when we say we are not psych patients if we do that.

Some patients do get inappropriately labeled as psych, but some are correctly diagnosed. It looks bad for us when our knee-jerk reaction is always to dispute those correct diagnoses, and also those people really need help and are not getting it due to their bogus diagnoses. I know we can all empathize with that. The girl my husband saw with facticious disorder easily could’ve died of it when it wasn’t caught for months due to her gastroparesis diagnosis and other diagnoses. That is a dramatic example, but there are other similar situations. The overdiagnosis of these conditions is as much of a danger to patients who need psych care as it is to us, and we should not be so naive as to think they don’t exist.
 
I only have a moment to post but my answer to the question is that when we looked into 'gastroparesis' on a thread here we found literature suggesting that the motility tests add nothing useful to the history of symptoms. I suspect that stomachs do become immobile but I am very sceptical that there is a 'condition' called 'gastroparesis' that is a useful diagnosis.

I am pretty sure you are right that the word contributes to all this confusion.

On the psychiatric side, I think things are more complicated, but I am reading you @Verity as thinking they are too.
 
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