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

[Clio]

This hits very close to home as a single actual factitious patient ruins the perception of thousands of people with ME/CFS. I was labelled a psych patient (due to some social anxiety I had over a decade ago) and refused any testing for my very severe GI symptoms. My symptoms were labeled "functional dyspepsia" and I was refused feeding support despite being unable to eat enough food to survive, not due to fatigue, the food just didn't digest fast enough. This was triggered by a covid infection, funnny how covid seems to be creating so many """functional""" problems right after the acute infection. I had to quite literally bribe the doctors to get feeding support.

 

[Eddie]

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.

If all you are saying is that sometimes people with psych diagnoses get additional or are incorrectly diagnosed with other conditions which can cause harm, I don't think that is particularly controversial. But that doesn't negate the fact that psych diagnoses face similar issues when they go beyond describing symptoms/behavior and try to attribute some kind of cause (especially when that cause involves bad thoughts). I think its is fair for pw ME to point out these issues but I agree that telling their doctors that psych patients don't exist isn't the appropriate place for that.

 

[bobbler]

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.

Agreed

It’s difficult because the sold action for gastros to be doing ‘in future’ is to repeat what we heard all the details of in Maeve’s inquest - and those delays and claims of doubts so silly dallying instead of/in order to not provide treatment in time was what killed

And now suddenly we are getting years later what sounds like typical post-hoc justification once someone has found a way to blame imaginary ‘some patients’ and it’s becoming a habit across the problem areas me/cfs got landed with (and I assume they cause similar problems for other conditions too)

It’s very easy to hope that because it’s ‘others’ being mentioned we are ok with accepting that demonising or what might be true

And the using of words like ‘plain obvious’ just bring appeals as if we disagree with or want more detail we are being fussy.

I’m shocked they think just saying it assertively makes it true but I guess it works for too many and scarily within the profession where they should be demanding specifics and science the most.

I don’t know whether these individuals themselves met any of these supposed ‘obvious first hand’ because it seems these rumour based policy changes always start with stories from others ‘being passed down and repeated and taken as rote’

I also think that there is such utter bigotry just around the term eating disorder (- it’s one of those accusations that can be used to / can causes havoc and no one gets proven innocent from , which the functional has now joined as part of the radioactive ‘be careful around that lot for unproven ominous reasons’ new version of hysterical woman - and those hysterical woman attitude people still very much exist) and it’s so incredibly badly informed as a ‘concept’ - we’ve found something treated even worse and used even more just as a loose term you can shove in someone then use it to rewrite their entire being etc - than me/cfs is. All rarely ever questioned given the huge implications but also how there is a heck of a lot I between and I think a lot are actually caused by false accusations and behaviour of others due to that causing someone to be made awkward when eating, shouted at and have their everything picked over until they finally get their way of causing that person to ‘appear awkward’ under circumstances they themselves should also feel awkward.

So I find all this idea of ‘obvious’ pretty puzzling. Particularly when being thin isn’t telling people anything - just that they are ill so should be heard and investigated and not having that idea assumed , and same with digestive issues.

All I take from this is that gastroenterology is having a fear and basis pushed thru its profession of ‘what if it’s an eating disorder’ that they aren’t talking facts or details in. And aren’t experts in so can’t rule it out by eye or say obvious without it sounding like bias that sadly only works inside the system (which is too quick to use these short hand stick labels about people).

 

[bobbler]

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.

The thing is that this lack of care has been happening to people before any of these newer examples or supposed problem diagnoses that are claimed as ‘causing the bias’ came along.

And I’m not sure those who deliberately avoid getting MCAS or gastroparesis labels are treated properly and without the same wish to shove em under one of those two or their bigger bucket of ‘functional’ , so it doesn’t add up when they tell themselves that’s why they do it/what caused it when we’ve seen the propaganda papers telling them to see all x as functional (and then of course that makes people look for finding /look and you will find approaches for all these claimed not nice suggestions of these unnamed cases)

It seems to be a very convincing way of systems doing this and getting the newer people in-board with this attitude as if it’s ‘fresh’ rather than a re-brand of the habit of their systems for years to make it seem sanitary and caused by bad patients of myth rather than bias of certain individuals top-down pushing it.

I don’t know much about the gastroparesus diagnosers and what they are seeing , doing and if it helps vs the ones who always assume it’s not based on ‘face doesn’t fit —-> functional’ articles . But i find its strange we never hear proper balanced people analysing both really problematic behaviours just jumping on one side of the other when both are clearly doing their thinking /scientific approach wrong because it’s blatantly obvious the only clinical approach is those managing to rise above and not get caught up with if persuaded by either. Even though they have to work in that ‘politics’ because their colleagues are also being sold it.

How does someone supposedly find the right staff person and know where their bias lies and if they get a label how that will affect their life.


Oh gosh it sounds like a disaster for nearly everyone (there’s always some who benefits from the system as it is so don’t want to change what they’ve got to the top of it what not) just revolving round not being resolved properly just blaming the latest example they can cite etc.

 

[V.R.T.]

And I’m not sure those who deliberately avoid getting MCAS or gastroparesis labels are treated properly and without the same wish to shove em under one of those two or their bigger bucket of ‘functional’ , so it doesn’t add up when they tell themselves that’s why they do it/what caused it when we’ve seen the propaganda papers telling them to see all x as functional

This is the hard truth of the matter. If we want to stem the biobabble coming out of charities and other advocates great, that could help. If we want to claim patients who are good and don't say the 'wrong' things to doctors won't get mistreated I think that is seriously naive and, from personal experience and the accounts I've read over the last five years, completely wrong.

We do not want to be percieved as victim blaming by the patient community.

 

[Mij]

There was never any mention of these multiple diagnosis mentioned, connected or tagged on to ME/CFS in the early 90s until years later in the internet sphere. I might add that no one in my ME circle back then mentioned delayed PEM either, including my ME doctor, but he understood not to exercise or over exert ourselves.

 

[Starrynight]

They do. It's a popular social media diagnosis alongside POTS and (h)EDS.

Who they?

Oh, you mean social media users, which means perhaps the majority these days including doctors!

Or perhaps you think I hallucinated the episode I described? I admit it was a little strange, but I've had better dreams! And I am still hoping to wake up young again, free from the nightmare of an illness that eludes explanation over so many decades, endlessly trying to walk the righteous path towards respectability, yet condemned to repeatedly stumble over indecipherable protocol set by the Medical Gods such that we, the afflicted, are only ever deserving of scorn and ridicule...

Still, sad to say, I haven't quite regained my relish for my favourite fragrant fish, scombrids being off the menu for the mast cell activated it would seem.

 

[Jonathan Edwards]

Or perhaps you think I hallucinated the episode I described?

I think you may be misunderstanding the discussion here. @Starrynight.
Nobody is denying that people with ME/CFS have food intolerances with very unpleasant symptoms.
Nobody is denying that mast cells are likely involved in that since the gut is packed with mast cells and they are reacting to stuff all the time and likely are more so if you have an intolerance.
These problems are an accepted part of ME/CFS.

In which case there seems to be no point in blaming them on some other speculated disease called "MCAS", which then gets blamed for all sorts of unlikely things like ligament damage, which at the same time is being blamed on another speculative category hEDS and on and on until nothing makes sense at all.

 

[richie]

Posts have been copied or moved from this thread:
Mast Cell Activation Syndrome (MCAS) - discussion thread

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...

According to Michael Sharpe, as far as I remember, candida is a myth. My experience was that 10 yrs of calf soreness was abolished by a few tea spoonfuls of nystatin powder over 1-2 days from the Burghwood Allergy Clinic under the late Dr Johm Mansfield. Many orthodox physicians would see that as fringe and join the BPS crowd in a round of derision. What do I and my ilk do? It helped me, it might not help you, no memes is my approach with open mindedness and scepticism as to any precise mechanism. IMO any doctor who would dismiss me on the basis of my story is the problem along with a hefty does of arrogance , not the fringe medicine that actually helped me. But the problem which you describe does lead to problems which you note. But the problem arise from the overall situation.
Nobody now can ever tell me whether I had low level sarcoid for decades possibly even since a teenager , some would dismiss any lyme testing as fringe , but take a chance or nothing or "All in the head" is all I have got. The only other diagnosis that might fit is ME/CFS. My whole medical history is a fringe.
And all the while we still have only a list of symptoms at diagnosis.

 

[Jonathan Edwards]

According to Michael Sharpe, as far as I remember, candida is a myth.

I don't think any physician would regard candida infections as a myth. Skin, nail and mucosal candidiasis are well recognised problems and the benefit of nystatin for some is documented in formal trials. I think Sharpe was probably suggesting that widespread undocumented claims of generalised candidiasis as a cause of all sorts of symptoms were likely false. My memory is that ten to twenty years ago lots of cases were in the media and my impression at the time was that the condition was almost certainly overdiagnosed.

What do I and my ilk do?

I guess that people have to navigate through the healthcare system as best they can, and a degree of caution or scepticism often proves well-founded. I have been offered operations and other treatments that I was able to establish were not a good idea. If a treatment sounds plausible and seems to help then most of us will be happy to think it worked, even if it is worth remembering that coincidences in this area are obviously pretty common.

But that is not what my post was about. What I am asking is for people who have been given a diagnosis or treatment, or who are carers or advocates for someone who has, refrain from setting up websites recommending these diagnoses or treatments if they themselves have no proper understanding of the evidence base. In other words I would urge you not to set up a website claiming nystatin is a marvellous cure for sore calves, sore eyes, palpitations and cancer.

 

[richie]

I don't think any physician would regard candida infections as a myth. Skin, nail and mucosal candidiasis are well recognised problems and the benefit of nystatin for some is documented in formal trials. I think Sharpe was probably suggesting that widespread undocumented claims of generalised candidiasis as a cause of all sorts of symptoms were likely false. My memory is that ten to twenty years ago lots of cases were in the media and my impression at the time was that the condition was almost certainly overdiagnosed.



I guess that people have to navigate through the healthcare system as best they can, and a degree of caution or scepticism often proves well-founded. I have been offered operations and other treatments that I was able to establish were not a good idea. If a treatment sounds plausible and seems to help then most of us will be happy to think it worked, even if it is worth remembering that coincidences in this area are obviously pretty common.

But that is not what my post was about. What I am asking is for people who have been given a diagnosis or treatment, or who are carers or advocates for someone who has, refrain from setting up websites recommending these diagnoses or treatments if they themselves have no proper understanding of the evidence base. In other words I would urge you not to set up a website claiming nystatin is a marvellous cure for sore calves, sore eyes, palpitations and cancer.

Yes that is what S had in mind from memory, but his engagement with the issue was dismissive and arrogant and to blame that on "fringe" nature of the medicine is inversion of blame. I agree that there were likely many cases of overdiagnosis and some people I know of spent a good deal on a ticket to nowhere for anticandida remedies they did not need.. In my case I had an immediate post hoc improvement and am inclined to see it as prompter and certainly nothing tom do with myths. I would never set up such a website but i will mention my own experience on forums here and there and I have a fair case that it should not be summarily dismissed without further enquiry, which S was doing for an entire population. I can report modest improvement of another symptom in another person whose blood was riddled with mycelial forms on electron muicroscopy but the other condtions would be beyond my experience. As far as the general issue of websites advocating this and that or with testimonials, I accept they pose a problem but arrogance and dismissive attitudes among professionals are part of that problem too. As we navigate we have to share.
IMO money making, one size for all, "the explanation" approaches fuel dismissiveness (I have exactly that response myself) but in fairness it is BPS and their ilk who incline to such monolithism as their approaches require a heavy dose of belief and thus a simplistic "gospel" to induce the state of faith.

 

[Starrynight]

I think you may be misunderstanding the discussion here. @Starrynight.
Nobody is denying that people with ME/CFS have food intolerances with very unpleasant symptoms.
Nobody is denying that mast cells are likely involved in that since the gut is packed with mast cells and they are reacting to stuff all the time and likely are more so if you have an intolerance.
These problems are an accepted part of ME/CFS.

In which case there seems to be no point in blaming them on some other speculated disease called "MCAS", which then gets blamed for all sorts of unlikely things like ligament damage, which at the same time is being blamed on another speculative category hEDS and on and on until nothing makes sense at all.

I may well be misunderstanding the totality of the discussion here as I haven't read it all. I am reacting to your early posts and the implication that patients are somehow to blame for how seriously this illness is taken. It is reminding me of the time when James Coyne briefly became interested in ME/CFS and then did an about turn and derided some patients as being part of the problem and demanded the "community" whatever that is, do something about it. Sorry.

You are also misunderstanding my post I think. I've never regarded myself of having any food intolerances, I've always considered them to be peripheral to the core symptoms from a diagnostic point of view, anyway, but what do I know? I was just rather bemused to be told by my GP that addressing "MCAS" might be helpful, but went along with what was suggested to no effect (and no surprise).

The reality for us patients is that nothing really does make sense at all. It's all just speculation, but isn't that what can to some testable hypotheses?

 

[Jonathan Edwards]

I may well be misunderstanding the totality of the discussion here as I haven't read it all. I am reacting to your early posts and the implication that patients are somehow to blame for how seriously this illness is taken. It is reminding me of the time when James Coyne briefly became interested in ME/CFS and then did an about turn and derided some patients as being part of the problem and demanded the "community" whatever that is, do something about it. Sorry.

I have tried very hard to point out in multiple posts that my intention is not to blame patients. James Coyne is hard to follow at times and I don't know what he was referring to.

What I am saying is that it is worth appreciating that patients, carers and advocates can worsen the problem of doctors refusing to take an interest, and that I have a clear example of that happening at my institution. That does not mean they are 'to blame' in a judgmental sense.

Nevertheless, there are advocates, particularly at charities, who persist in repeating pseudoscientific claims when they should realise that since they do not actually understand what they are about they may be contributing to harm and so may be acting irresponsibly.

The reality for us patients is that nothing really does make sense at all. It's all just speculation, but isn't that what can to some testable hypotheses?

Sorry I don't follow this.

 

[Kitty]

I am reacting to your early posts and the implication that patients are somehow to blame for how seriously this illness is taken.

I know there's a lot of text to plough through, but the broad message is that doctors are largely to blame.

Not all of them, just ones who hand out diagnoses that aren't widely accepted. One of the reasons for this is that the names—in this case 'mast cell activation syndrome'—suggest the cause of the symptoms is known.

There are several problems there. Firstly, the cause isn't known. Secondly, if the cause were known, it wouldn't be called a syndrome. Thirdly, there's no reason to make these symptoms into a separate entity, when we already have recognised syndromes (ME/CFS, some cases of IBS) that include them. So some people think 'MCAS' makes no sense from any perspective.

Patients just got stuck in the middle, which is the reason for the thread. Some were unknowingly recruited by doctors in private practice (often in the US) to help boost their profile as 'experts' in these conditions by sharing stories about them. In other words, sick people are used as unpaid influencers to help unscrupulous practitioners make a lot of money.

So the advice is for patients to be aware of the controversy, especially when describing problems to new doctors. If they encounter one who's sceptical about these diagnoses, they risk being seen as caught up in fringe medicine and therefore potentially lacking credibility.

That might be unfair, but the risk is real. It may help if we focus on symptoms rather than diagnoses, and describe our experience in our own words rather than using phrases we've read. Doing that gives a doctor the best chance to work out what's going on, and potentially to spot something another one missed.

We also need to be aware that sharing positive internet stories about these diagnoses may harm people who don't yet know the background. Doctors' notes can include coded or inflected information, and once something's written into a person's medical record, every future doctor can see it.

 

[hotblack]

I agree with a lot of what’s been said and the main message. But I also think it’s worth considering that so many of us had the same reaction to some posts and how this has been talked about at times. Putting that back on people as them misunderstanding is I think a mistake and missing an opportunity to reflect and consider how to better communicate, regardless of what any intent may be.

I’ve covered this already so won’t go over it again, but it is a long thread and wanted to reassure people, I don’t want them to go away thinking they’ve got something wrong here.

 

[Kitty]

I don’t want them to go away thinking they’ve got something wrong here.

Yep. Almost none of us understood this. Why should people even have suspicions, when their previous experience was that doctors mostly knew their stuff and tried to help? It wouldn't occur to them that some really aren't very bright, and others make stuff up to exploit people on an industrial scale.

 

[Sly Saint]

Sorry I haven't read this whole thread and appreciate this is slightly off topic but I was wondering recently why Fibromyalgia (which used to be almost a synonymous diagnosis with ME) is regarded as 'genuine' and patients not expected to make a complete recovery after 'treatment'.
At what point did it become acceptable to have Fibromyalgia but not ME?

 

[V.R.T.]

Sorry I haven't read this whole thread and appreciate this is slightly off topic but I was wondering recently why Fibromyalgia (which used to be almost a synonymous diagnosis with ME) is regarded as 'genuine' and patients not expected to make a complete recovery after 'treatment'.
At what point did it become acceptable to have Fibromyalgia but not ME?

I think because a) pain is something that is easily understandable to the average person, unlike PEM, and b) many people with fibro who don't suffer from PEM can work, so people are less likely to decide they're lazy.

But it is still a target for the psychobehavioural crowd. And many people are ableist towards people with much more 'accepted' diseases than fibro.