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

[rvallee]

I was referred to a private cardiologist who also works for the NHS. In his letter with the NHS logos, he speculated about my hEDS, MCAS and POTS. He was the only one ever to suggest I had hEDS (I never thought I was hypermobile as all teachers and trainers had told me I was stiff). He interpreted my food intolerances as MCAS. I can't remember if he attributed medication sensitivities to MCAS or dysautonomia. He didn't mention ME/CFS in writing and he was psychologising the fatigue/PEM side of things.
He also teaches at the university.

Those are personal experiences, but this is also similar to what happened to me. I have never once brought any information like this forward to a physician. The first time I even heard of the concept "chronic fatigue" was from the GP who diagnosed me, and I'm pretty sure she put fibromyalgia on it too since it's more accepted than ME/CFS for disability.

2 years ago I started having POTS, all the typical symptoms. Eventually I worked my way to seeing a cardiologist. Knowing what to expect I did not say a single thing to even hint at it, simply described the symptoms, and he immediately said it was POTS, prescribed Ivabradine, which definitely worked at lowering both my resting heart rate and its peaks on efforts, which at its worst peaked at 160+ from simply brushing my teeth. As I have observed out of LC, being a common problem, it eventually stabilized, with time, as is the obvious case for the vast majority and has long been known, and I no longer need the Ivabradine.

Also I have recently changed clinic and had to go there for unrelated reasons and in the new patient interview I didn't mention any of it because I know it's pointless. This is all a very difficult thing to navigate even in the best of cases, because it's a giant mess of confusion. To expect a population of millions, most of whom only learn about any of this after many failed attempts with health care, to 'behave' the right way is pure fantasy.

Things are definitely far from being as simple as "everyone just stop using those words because they anger the physicians who then take it out on us with collective punishment". Life is never that simple, and this situation is frankly a 11/10 on the FUBAR scale. And that's without even taking into account how psychosomatic nonsense that has far less evidence than any of this is parroted with the same credulity as a typical Joe Rogan interview. We can't expect a rational solution to a completely irrational situation, this is why we have gotten nowhere by being right and pointing out all the obvious flaws in opposition research.

 

[Jonathan Edwards]

Then they give long lists of symptoms, causes, diagnosis, treatments, 'PoTS is very common in long COVID', etc. This isn't a fringe or a lobby group, it's the NHS talking directly to patients. If some doctors are going to shun patients for believing they have POTS, those doctors need to understand that the call is coming from inside the house.

Firstly I want to re-emphasise that the point of the discussion here is not to criticise patients for telling doctors they have certain diagnoses. We are all agreed that patients should not be dismissed because they think they have this or that diagnosis. There is nothing to argue about there.

(The only caveat to that is that there are patients who insist on having three or four diagnoses that sound as if they hve no meaningful basis and get abusive or peevish if doctors disagree. If someone comes to me for advise and insists that whatever i think is wrong because they already know their diagnosis I don't have a lot of sympathy. I think members need to be aware that some people aren't necessarily as reasonable as members here tend to be. The clinic that I quoted attracted people from all over the country because they believed they had a particular diagnosis which they almost certainly did not have in any useful sense.)


The situation regarding NHS information sheets is significant but is worth a bit more explanation.

In the 1970s UK medical textbooks were rather old fashioned, without adequate references and often waffly text that was not up to date on evidence. I realised swatting for exams that USA-based textbooks were far better. References were rigorous. All up to date evidence was cited. Discussion was critical and astute. The US had rightly gained the reputation of doing things more thoroughly in biomedical science.

But by 1995 things had changed. European journals and textbooks started outcompeting US versions. On the clinical side Europe came to be seen as ahead in quality control -typified by NICE, which was often more rigorous than US equivalents. US medical education declined progressively. It became possible to practice as a physician having trained at a school of 'osteopathic medicine'. Medicine became more and more a matter of commerce and marketing. Journals ceased to have any meaningful quality control so that names like Nature and Science, that used to indicate rigour, became just another part of the salami machine.

Since the 2005 PFI initiative in the UK the NHS has also become much more politically driven and other vested interests have influenced literature on clinical care.

The story has further complexities but the upshot is that by 2025 both US and UK medical information has been degraded from the rigorous approach based on reliable evidence of the 1970s and 1980s to accommodate also sorts of vested interests and also to dumb things down, supposedly because most people are dumb or have a reading age of 8. Literature put out by the NHS has no quality control and a lot of it reflects pushy groups wanting to sell their wares.

The 2021 NICE guideline was an intriguing point in history because NICE was still using a degree of rigour and ousted the vasted interests that had crept in in 2007. But the rest of the medical establishment had been taken over by the yes men and women who were happy to go on supporting vested interests.

POTS is an interesting example in that it has become quite widely used, not just by private rheumatologists and the like but also by cardiologists who probably find it a useful way impressing patients how clever they are. I don't know what a poll of UK rheumatologists on the usefulness of the term would reveal but you might get quite a high positive rate. At the same time there will be a significant number who like me are very unsure what the term is supposed to mean and would not use it themselves. I don't think you would find the muddle that is 'POTS' in a 1975 US medical textbook. No more than you would find a chapter on fibromyalgia, even though the term existed, or on nerurasthia, which had been recognised as too vague to be useful.

In short, 'official' medical literature is now mostly not worth the paper it is written on or the scrolling down of the e-text.

 

[Jonathan Edwards]

Maybe just to add to a previous comment on what to use instead. The reality for me is that if I was talking to a colleague about a patient I would say they report postural tachycardia, or maybe orthostatic tachycardia (you don't need both postural and orthostatic). That seems entirely adequate. But I would use the term in the same way that I would say a patient had an unstable left knee. That is to say that it is a clinical problem, about which we may have useful predictive information, but not some global diagnosis of the patient's state of health. It explains nothing else and has no particular implications about causal mechanisms. It is just one problem, often amongst some others, that might be high blood pressure or diabetes or deafness.

 

[Utsikt]

If practitioners are providing all kinds of unevidenced statements about pathology and prescribing treatments without any evidence of safety or efficacy, it is not serious medicine or science. I think that qualifies as quackery, like how BPS is quackery. It can still be quackery even if it’s normal and accepted, and it doesn’t have to be as bad as LP to be quackery.

But the symptoms and disability people experience are not fake. They are the only things that are real in all of this. They don’t become fake or made up or psychosomatic just because we don’t know yet how the underlying biology works.

I get the impression that many think that getting a diagnosis of POTS, MCAS, hEDS or whatever serves as a proof and formal acknowledgement that their symptoms are real, that they should be taken seriously. At least I thought that myself when I was first introduced to POTS. And I think that’s an absurd situation - that for many, the only people that say they believe them are the ones that want to sell their own beliefs back to you.

 

[Jonathan Edwards]

I too am very concerned that people reading some threads on this forum are getting the impression that there is a general dismissal by at least some members of diagnoses of POTS, hEDS and MCAS as 'fake' syndromes, and by implication that the patients are 'faking it', and/or that their doctors are quacks, and any treatments they prescribe are 'woo'. If that is the impression people are getting, I think we have a problem that we need to do something about.

There are several points there. I am probably seen more than anyone else as the sceptic so should make my position clear. I have tried to do so but maybe should just go through again point by point:

1. I do think that POTS, hEDS and MCAS are 'fake syndromes' in an important sense. I may be wrong about one or more but I have every reason to think there are no meaningful syndromes with these names. By that I mean that using these terms probably causes more confusion and bad decisin making than it helps and there are much simpler and more precise ways of describing the problems that people have. These names are deliberately designed to be vague so that they can be used to appear to explain a wide range of things nobody knows the explanation for.

2. That in no way implies that a patient with one or more of these diagnoses is 'faking it' or that they can be blamed for saying that is their diagnosis. I would encourage people to say that 'Dr. so-and-so diagnosed me with X or Y', indicating that the patient realised that the diagnosis might be uncertain.

Nevertheless I think members should be prepared to accept that there are people who carry these diagnoses around who seem to be remarkably well considering. I can think of a newspaper article about someone suffering terribly with EDS to the extent that it made it quite difficult for them when they are winning prizes at show jumping. As I have said in the past there are probably as many people who thin they have any particular chronic disabling condition as actually have it. With ME/CFS that is uniquely problematic because there is no objective way to distinguish. Nightsong's post a while back covers this very well.

3. To me, doctors who use diagnoses like MCAS, hEDS and POTS are mostly quacks to the extent that they have no good evidence for what they claim and hand out treatments for which there is no reliable evidence of benefit. There is no black and white distinction between a good doctor and a quack and I know many who hover in between, but in my experience of UK rheumatologists the distinction is fairly easy to make. A quack may be perfectly competent at managing recognised conditions with well tried treatments but for these diagnoses the dividing line is fairly clean.

So maybe we do have a problem. I think we have a big problem, but maybe in a different sense. I think the problem is that people are far too accepting of medical information in this field. Muddled information has the capacity to block progress in a scientific field completely for decades. If the forum aims to promote progress in understanding ME/CFS the muddled approach that accepts these diagnoses is going to hold things back badly.

 

[Utsikt]

Do official sources actually say this?

I don’t see any other reason for prescribing beta-blockers as treatments for POTS in general. If it’s believed that blood pooling is an issue - how does it make sense that lowering the HR would improve the situation?

 

[Jonathan Edwards]

His conclusion was that I had dysautonomia aggravated by hEDS, MCAS and maybe some other things.

I'm not sure what is a patient supposed to do in this situation. Accept his expert opinion and seek further NHS help while the NHS staff thinks the patient is imagining things although the letter was signed by their colleague? Try to disprove the letter and come across as psychotic claiming you know better than the cardiologist and university lecturer?

I sympathise. If you had susequently come to me I would probably said that I sympathise and that I agree that none of what was said makes much sense or has any evidence base. I can think of colleagues who would probably say the same but there are others who would agree with the cardiologist. The whole thing is a nightmare. But I think the answer to what you are supposed to do is maybe learn as much as you can from open discussion on places like S4ME where everyone is allowed to give their value and challenge others without anyone being disrespected.

The absurdity of the situation surely just emphasises how things need to change for people with ME/CFS. The BACME people lap up all these diagnoses because they know no better. There has to be a better way to do things.

 

[Jonathan Edwards]

reconsider one small part of your approach or how it is phrased

What exactly is that small part? Sorry to repeat things but I would like to understand what is upsetting people.

 

[Jonathan Edwards]

I feel I’ve had a better understanding of it from about 6 months into this illness, than any Dr I’ve seen. But the Drs either ignore you or want to put you in a convenient even if incorrect box. So what is a patient given those choices supposed to do if offered that box?

I have no answers and regret that is the case.

 

[Trish]

3. To me, doctors who use diagnoses like MCAS, hEDS and POTS are mostly quacks to the extent that they have no good evidence for what they claim and hand out treatments for which there is no reliable evidence of benefit. There is no black and white distinction between a good doctor and a quack and I know many who hover in between, but in my experience of UK rheumatologists the distinction is fairly easy to make. A quack may be perfectly competent at managing recognised conditions with well tried treatments but for these diagnoses the dividing line is fairly clean.

Are their rheumatologists who would say exactly the same about the 'quacks' who diagnose ME/CFS on the grounds that there is no good evidence to support it as a useful clinical entity, and for which there are diagnostic criteria ranging from Oxford to ICC and with prevalence anything from 30% for 'chronic fatigue' aka Oxford CFS, to well under 1%. Would they call you a quack for believing ME/CFS to be a useful label for a distinct clinical entity?

 

[Jonathan Edwards]

I get the impression that many think that getting a diagnosis of POTS, MCAS, hEDS or whatever serves as a proof and formal acknowledgement that their symptoms are real, that they should be taken seriously.

I get that impression very strongly. And the irony is that these labels are tickets to being disbelieved by the entire medical profession, some of whom will play the game of pretending they explain something and hand out pills and some of whom will say they don't want to be involved.

 

[Trish]

Firstly I want to re-emphasise that the point of the discussion here is not to criticise patients for telling doctors they have certain diagnoses. We are all agreed that patients should not be dismissed because they think they have this or that diagnosis. There is nothing to argue about there.

(The only caveat to that is that there are patients who insist on having three or four diagnoses that sound as if they hve no meaningful basis and get abusive or peevish if doctors disagree. If someone comes to me for advise and insists that whatever i think is wrong because they already know their diagnosis I don't have a lot of sympathy. I think members need to be aware that some people aren't necessarily as reasonable as members here tend to be. The clinic that I quoted attracted people from all over the country because they believed they had a particular diagnosis which they almost certainly did not have in any useful sense.)

Why is it the fault of the patient if they believe their doctor, who they have learned to trust and rely, on tells them they have a named syndrome or disease? If a patient came to you whose GP had told them they have rheumatoid arthritis, and you do whatever you do and tell them you disagree, that probably comes as a shock to the patient, so it's surely not uncommon for patients to want to cling on to the diagnosis they have believed in, especially if you don't have an alternative 'real' sounding name for their condition to put in its place.

 

[hotblack]

What exactly is that small part? Sorry to repeat things but I would like to understand what is upsetting people.

The anecdotes and justification used for the action needed which keeps on accepting a false premise posited by medial professionals for their own failings and putting blame on patients. I’m sure it’s unintentional but that is how it can be perceived and it keeps on being repeated.

I don’t really have any more to say. I’ve covered it already and feel like all I’m doing is going in circles and repeating myself, moving the words around and diluting or confusing things. It was perhaps a subtle but I think important point in how we approach talking about this and the supporting arguments we use, especially to get the best reception from as many patients as possible. People are free to agree or disagree but I’ll leave it here I think and just refer any questions to my earlier posts and save my current self a headache.

 

[Jonathan Edwards]

Why is it the fault of the patient if they believe their doctor, who they have learned to trust and rely, on tells them they have a named syndrome or disease? If a patient came to you whose GP had told them they have rheumatoid arthritis, and you do whatever you do and tell them you disagree, that probably comes as a shock to the patient, so it's surely not uncommon for patients to want to cling on to the diagnosis they have believed in, especially if you don't have an alternative 'real' sounding name for their condition to put in its place.

I am not suggesting that it is the fault of the patient if they believe a doctor. But if as the second doctor you think the diagnosis is inappropriate you are obliged to say so. The patient may be shocked but that is not the fault of the second doctor - especially if the first doctor has provided a diagnosis that is meaningless or unhelpful. The second doctor should try to be tactful but if they are going to be of any help they need to express their view firmly and give clear reasons.

And as I said above, these 'real sounding names' are in fact doublespeak codewords that doctors use either to indicate to other doctors that there is nothing is wrong with you but you might be a lucrative customer.

But this is surely not what this thread is about at all. We are all agreed that doctors should be prepared to see patients and do their best to explain what is wrong. Patients are entitled to believe what they like. The question is how can we reduce diagnostic disinformation contributing to failure of both care and research.

I am not suggesting targeting the dismissive doctors because at present I cannot see how to change the minds of complacent irrational colleagues. I am not suggesting for a minute targeting patients - I don't think I have suggested that at any point despite peole seeming to think so. I am also not suggesting targeting the doctors who hand out these diagnoses because I see no hope in changing their behaviour.

The point of disinformation that I do think might be worth targeting is the advocacy groups because they are doing a disservice to the people they take money to help by promoting disinformation. And already perceive significant tensions amongst advocacy groups because a lot of intelligent patient representatives understand this.

 

[hotblack]

The point of disinformation that I do think might be worth targeting is the advocacy groups because they are doing a disservice to the people they take money to help by promoting disinformation. And already perceive significant tensions amongst advocacy groups because a lot of intelligent patient representatives understand this.

Agreed. To me the question is how we approach that and the justification and arguments we use to do so.

Maybe we can focus on the message of ‘this makes communicating the good new scientific discoveries (which yiu as a charity are supporting) harder’?

Some of the other more grassroots patient advocacy groups it could be harder, as they may be very attached to or dependant on the ideas.

 

[Jonathan Edwards]

The anecdotes and justification used for the action needed which keeps on accepting a false premise posited by medial professionals for their own failings and putting blame on patients. I’m sure it’s unintentional but that is how it can be perceived and it keeps on being repeated.

But I am not accepting anything 'posited by medical professionals for their own failings' am I? At no point have I blamed patients as far as I am aware. The reason for taking action is that people with ME/CFS have now been completely excluded from physician care in the UK and I think it at least very likely that has been contributed to by the flow of diagnostic disinformation. I am simply suggesting that it might be tactically helpful to try to reduce the flow of disinformation.

 

[Trish]

I get that impression very strongly. And the irony is that these labels are tickets to being disbelieved by the entire medical profession, some of whom will play the game of pretending they explain something and hand out pills and some of whom will say they don't want to be involved.

Isn't that true for ME/CFS as well? Except we don't get pills we get told to exercise. I don't think any of the few doctors I've come across believed ME/CFS was real, apart from possibly one about 20 years ago who signed me off for ill health retirement but spoiled the impression of being believed by recommending a quack therapy.

I wonder to what extent the diagnosis each of us gets depends on the particular medical specialism we see. So a cardiologist will diagnose POTS, a GI specialist IBS, an allergy specialist atopy or MCAS, a rhematologist hEDS and/or FM, and so on. If we see several specialists about different aspects of ME/CFS, it's hardly surprising we end up with a muddle of labels, and all those specialists may reject ME/CFS as not a real diagnosis.

The question this thread is trying to address is whether there is any role for advocates in helpiing pwME to get the best care possible and avoid being rejected as psychosomatic by doctors into whose care we are landed, in some cases in dire life or death need for feeding and other support.

JE has told us that arriving at hospital with a list of conditions which some doctors don't believe are real conditions leaves the patient vulnerable to being shoved off to psychiatrists. That is a truly disastrous situation. The blame for this lies squarely with the doctors refusing to see the patients' real needs.

What I'm struggling to understand is why, if I tell a hospital doctor I have a list of syndromes, the doctor does not have the integrity and clinical good sense to look beyond that and see the need in front of them, ask pertinent questions about symptoms and eating difficulties, and provide appropriate feeding support.

 

[Jonathan Edwards]

Some of the other more grassroots patient advocacy groups it could be harder, as they may be very attached to or dependant on the ideas.

I am thinking specifically of UK ME/CFS and maybe Long Covid advocacy groups who I do not see as needing to be attached to these 'comorbidity' categories. I agree that there are some such as #MEAction who do seem rather tied to these ideas.

 

[Trish]

I agree that there are some such as #MEAction who do seem rather tied to these ideas.

That may be more true of MEAction USA than MEAction UK.

 

[Trish]

Maybe a starting point is to collect information on what each of the main UK ME/CFS and Long Covid organisations are saying about comorbidities, and of course other countries as well if members involved in this discussion can contribute information about their local ME/CFS organisations.