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

[DHagen]

Well you may not agree with me, but I agree with you DHagan, haha. I share all these concerns and I think this is very true:

I also worry that the more we push, the more other groups of patients could see us as their enemy.

I was thinking above just about the fraction of patients who are exposed to S4ME and end up joining us here, which is probably always going to be a minority.

I agree in as much as I think that S4ME is a very important entity and community, one for which I am very grateful and which I believe has done a lot for me, much of it in precisely the manner that you describe. The disagreement, which I certainly could have phrased better, was that this is a universal or even common response - which I know you probably didn't mean to imply. My apologies for that.

I really wish I had some better ideas about what to do - I do not believe that the solution is to stop "pushing." Finding ways to moderate language in some instances might be a help, but there are limits, and including an endless series of caveats and explanations with every post and every discussion is obviously not practical, nor is it particularly conducive to discussion.

Even if we were somehow to do everything right, I have no doubt there would remain a certain number of patients who will turn away simply because of perceived common ground between the views expressed here and the views expressed by those who simply negate and deny. On that front, again, the only "solution" I can see having significant effect is to offer a real alternative to replace the explanations they've come to accept.

 

[Utsikt]

Does your doc prescribe any meds for people with OI?

If they have really bad HR responses when standing or very high HR in general (and palpitations) that is affecting them negatively, he might prescribe very low dose beta blockers. But he is clear that it will probably only affect HR and palpitations, and we shouldn’t expect it to fix the OI.

Other than that he tells you to stay hydrated, but if the urine is clear you’ve probably got enough water.

 

[rvallee]

But as I have pointed out before, these people had never heard of Wessely or the PACE trial. They cannot have been influenced by them. The more general biopsychosocial influence came in the 1980-2000 period and increased the number of fatigue clinics and popularity of the condition, with young consultants being put on to them.

I doubt most physicians promoting a CBT/GET or a generic rehab model have heard of Wessely either. It still impacts what they do, they just don't know it. Wessely didn't put himself as a defining authority whose every word had to be listened to, he worked far more effectively behind the scenes, influencing systems and institutions in ways that affect everything about how the illness is perceived, whether someone had heard of him or not. He still does, has made very few public statements about LC but it's pretty much guaranteed that he has played a big role behind the scenes. Real power is always wielded in private.

His publicly visible work probably had a limited impact, mostly affecting public perception and encouraging mockery, but it all happened while he worked behind the scenes. One pattern we keep seeing is how the more secretive, as in away from the public eye, things written down about us, the worst they are. And what's public is already bad enough.

Plus it's not as if he came up with anything new, he was just adept at promoting it effectively, within institutions, and he's just one guy in this, as we've seen with LC being completely botched the same way independently, this is far more about beliefs. A lot more was happening in secret behind closed doors while he was mouthing off to the press about being victimized.

 

[rvallee]

The LC communities I was in outright rejected ME/CFS at the start, but they embraced all the woo they stumbled upon. It was far far worse than what I’ve experienced in ME/CFS communities, only some of the pwME/CFS were the ones trying to say that they’ve already been down that road and it leads nowhere.

It plays right into the BPS narrative of imagined illnesses. I know, because I’ve seen LC and ME/CFS advocates do it in public debates. It’s bad strategy - yet another reason to try to do something about it.

It's a coherent strategy in itself, the idea that a lot of evidence that this is a thing is something that should lead to more effort at solving it is rational. Where it fails is that the way medicine works, where it does not exist, cannot exist, until they have the full picture, is not particularly coherent. Random people can't be expected to know this, and it's difficult for the public advocates to decide whether it makes more sense to emphasize that there is a lot of bad and/or preliminary evidence compared to just shrugging, saying we don't know much but it still needs to be solved.

The problem is that we are faced with an incoherent position: this does not exist. Of course it does, it's maddening to be told it doesn't. And by exist I mean in the way we experience it, which is a completely different meaning than the usual "of course it exists, mind-body and so on and so forth" spiel. So people react rationally to this odd pushback, but rationality does not factor in, which is something everyone assumes physicians want, that they must want evidence, loads of it, diagnoses, the language they speak.

 

[Jonathan Edwards]

What should I do to be "a good advocate"? Should I send a letter to the ESC asking them to rename it?

All I am suggesting is that to be a 'good advocate' you should refrain from setting up websites or acting as an officer of an advocacy group in ways that promote beliefs in medical categories that you are not in a position to fully understand. Just don't go around bullshitting about stuff you don't really uderstand. That isn't such a big ask, is it?

POT may be quite a reasonable concept but the linking to a 'syndrome' adds nothing useful to decisions on cardiovascular drugs and allows physicians to manipulate patients into believing they (the physicians) know more about what is wrong than they do. If this was serious medicine people would just be talking about POT, not POTS. And definitive trials would have been done.

 

[Utsikt]

@Formerhuman I think I misunderstood your question earlier. I agree with Jonathan that all that can reasonably be expected by someone is to not contribute directly to the misinformation on topics where they don’t have enough skills to know what is misinformation and not.

If anyone wants to advocate more than that, I think we need to try to get the patients with influence to tone down the misinformations as well, especially the ones involved in associations. So that could be a goal. How to do it is another question..

 

[Formerhuman]

I am not sure that my question has been addressed.

As I mentioned before, I understand the issues with the term "POTS" My question was: "Should we stop using the term POTS?"

POTS is not a concept confined to a few advocacy groups and some marginal doctors. It appears in clinical guidelines, leading medical journals, and all the major medical textbooks, such as Harrison's and Davidson's. In the US, a specific ICD code for POTS was introduced in 2022. Cardiologists usually know nothing about ME/CFS but quite a few are familiar with POTS .

I feel that those who mention POTS on S4ME are met with a degree of disapproval. So I would like to understand better what alternative term is proposed on S4ME to describe excessive orthoststaic tachycardia in orthostatic intolerance. I also wanted to point out that patients with ME/CFS will inevitably continue to bring the term POTS, because it has become embedded in healthcare systems.


I feel like my participating in the thread causes patronizing replies and angriness. If my question is inappropriate or does not meet some standards of erudition, it is not mandatory to reply.

 

[DHagen]

I feel that those who mention POTS on S4ME are met with a degree of disapproval. So I would like to understand better what alternative term is proposed on S4ME to describe excessive orthoststaic tachycardia in orthostatic intolerance. I also wanted to point out that patients with ME/CFS will inevitably continue to bring the term POTS, because it has become embedded in healthcare systems.


I feel like my participating in the thread causes patronizing replies and angriness. If my question is inappropriate or does not meet some standards of erudition, it is not mandatory to reply.

I would just like to state that I am grateful to you for participating and for asking this question. It is an important matter.

 

[nataliezzz]

POTS is problematic because it says that the rise in HR when standing is causing the issues.

Do official sources actually say this? My impression is that they don't assert that the orthostatic tachycardia itself is the primary driver of symptoms in POTS; rather, that it can cause/contribute to some symptoms, but that the orthostatic tachycardia is a compensatory mechanism for other underlying factors causing/contributing to symptoms too, like hypovolemia.

I would very much prefer it if the associations distanced themselves from Rowe and the other POTS doctors, and rather started talking about OI instead.

Since you mentioned Rowe, I just checked out the first document by him (for Dysautonomia International) that came up in a search and he is asserting that both neurally mediated hypotension (NMH) and POTS are different responses to the same underlying problem of blood pooling in abdomen/limbs. And suggesting that symptoms in POTS are caused (at least in part) by reduced cerebral blood flow.

https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

 

[Hutan]

I'm very sorry @Formerhuman that you have felt concerned when participating.

I can remember coming across the idea of POTS about a year after my family became ill with ME/CFS and thinking it was helpful. I told a doctor about it, who was unimpressed. I tracked my heart rate, and I became convinced that higher resting heart rate and higher increases in heart rate on standing correlate with PEM. Actually I still think that. For sure, there have been occasions when my heart rate has increased alarmingly and stayed there, or can be stupidly high just reclining on the sofa.

I read the literature that suggested that POTS was caused by autoantibodies, and it seemed interesting.

I found a cardiologist who promoted the idea of POTS at an ME/CFS conference, and his idea that blood was pooling away from the brain seemed to make good sense. Eventually I got to see him. And actually and disappointingly, he wasn't that great. He wanted my son and I to do GET. He eventually agreed to prescribe us fludrocortisone, in the hope that once we felt better we might be open to his exercise plans. The fludrocortisone didn't help our ME/CFS symptoms and made no noticeable difference to the high resting heart rate or orthostatic tachycardia on bad days.

I started realising that the literature on autoantibodies on POTS that had looked promising never seemed to move on to actually looking convincing. I realised that there are not good studies on the treatments that were suggested, not even salt. I started understanding that the studies looking at orthostatic tachycardia have all sorts of problems and that the tilt table scenario may not be that relevant to ordinary life.

It even started to become apparent that orthostatic tachycardia is not nearly as common, or at least as replicable on demand, in people with ME/CFS as we had thought. That one definitely was a surprise that took some adapting to.


Personally, I don't think we need to tell people who say they have POTS that they don't. I'm happy to leave people who only have a label of POTS to work out what is right for them. Maybe they have something different to me.

My concern is with:

• the claim that POTS is a common comorbidity of ME/CFS (we don't have good evidence that it is). For sure, feeling bad when being upright for a while seems to be very common - that feeling of 'I need to sit down now' or 'I need to lie down', but that's not POTS.
  
  
• the idea that the science of the cause of orthostatic tachycardia or orthostatic intolerance or POTS is well sorted (I don't think it is yet, not even at the gross level of whether cerebral blood flow or oxygen extraction is a problem and that's really frustrating because surely that is something we can pin down)
  
  
• importantly, the idea that we know what treatments make people who have both ME/CFS and orthostatic intolerance feel better. (sadly, we don't. And that's also very annoying as we have so many ME/CFS doctors prescribing drugs and talking about salt, we should have had some good studies by now.)

So I would like to understand better what alternative term is proposed on S4ME to describe excessive orthoststaic tachycardia in orthostatic intolerance.

I think we have been tending to just using the words 'orthostatic tachycardia' if that is what people have, and 'orthostatic intolerance' as that symptom of feeling bad when we are upright. Is there a problem with just using those descriptive terms? After all, 'postural' and 'orthostatic' are sort of the same things, and ME/CFS provides all of the 'syndrome' that we need.

 

[Jonathan Edwards]

I feel that those who mention POTS on S4ME are met with a degree of disapproval. So I would like to understand better what alternative term is proposed on S4ME to describe excessive orthoststaic tachycardia in orthostatic intolerance. I also wanted to point out that patients with ME/CFS will inevitably continue to bring the term POTS, because it has become embedded in healthcare systems.

I also hope that people who use the term POTS here are not disrespected. The term has become very widely used, as you say, and is part of the general medical folklore for many physicians, not just a small group. Nevertheless, I have always been uneasy about the way it is used and discussions here confirm that it is a serious muddle. Even on this thread people are giving all sorts of views on what is. implied.

To me the answer to your question is simple. POT, postural orthostatic tachycarida, is a perfectly clear term and conveys all the clinician needs to know. It is the S that muddles things. If POT is an aspect of ME/CFS then there is no need for another S (syndrome). If various problems do occur together because they are linked in the way they come about then that should be recognised as one syndrome, not four. So people with ME/CFS may have POT, or may have OI without tachycaridia. They may have MCA but since mast cell activation is part of almost any reactive pathology it doesn't mean much. They may have hypermobility, but are very unlikely to have EDS, and so on.

I have come across lots of people with a diagnosis of POTS medically and socially. They have all sorts of different problems, POT often being the least. I think it causes more confusion than help.

 

[Haveyoutriedyoga]

Sometimes I just say “I’ve got syndromes”, in a slightly dark and sarcastic tone and leave it at that.

 

[Eleanor]

As I mentioned before, I understand the issues with the term "POTS" My question was: "Should we stop using the term POTS?"

POTS is not a concept confined to a few advocacy groups and some marginal doctors. It appears in clinical guidelines, leading medical journals, and all the major medical textbooks

Just to give another example, I googled 'Long Covid neuropathy' last night and one of the top results was the NHSInform page on Long Covid: https://www.nhsinform.scot/long-term-effects-of-covid-19-long-covid/ [edit to add, sorry, it's the POTS link given on that page, not the LC page itself]

which begins:

Postural orthostatic tachycardia syndrome (PoTS) is when your heart rate increases very quickly after getting up from sitting or lying down. Symptoms may ease with changes to your daily routine. Some people may need treatment with medicines.

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.

 

[Trish]

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.

I wonder whether there is a way as a forum we can make a statement to clarify that the issue is not about the reality of any individual's symptoms, nor is it about telling patients that they should not say they have these diagnoses and associated treatments which may be very helpful to individuals, including some forum members. I am pleased for (and even envious of) any individual who has found a treatment that works for them and a supportive doctor.

But I also don't want us to stop discussion of these diagnoses in terms of research evidence, diagnostic criteria, and the impact on advocacy and medical provision for pwME of some of us being given long lists of additional diagnoses and of advocacy organisations promoting the idea that MCAS, hEDS and POTS, FM, IBS, migraine, and even CCI/AAI are all common co-morbidiities of ME/CFS.

What I want to see more of is the doctors who diagnose and prescribe treatments for each syndrome to push hard for, and even undertake themselves, research to find out whether there are treatments we could all benefit from, so patients are not subjected to trial and error based on ancedote, or in many cases getting no treatment at all.

ME/CFS shares some of the same problems as other syndromes of multiple sets of diagnostic criteria that have changed over the years, and lack of biological and clinical trial evidence.

Oxford criteria of CFS defined pretty well anyone with chronic fatigue including such a wide spectrum of causes from post-infectious to anxiety, depression, hyperventilation and anything else the doctor couldn't pin down to known biology.
Fukuda, which doesn't require PEM so may be a bit like the Oxford criteria, including too many different causes.
ME - which implies specific pathology not shown to be true for most pwME

We have endless discussions about whether ME and CFS are useful diagnostic labels. We've ended up with a compromise ME/CFS, and even that has some of the same problems as, for example, FM and MCAS, of not being clearly defined, and the biology being unclear. And of some doctors thinking if we have and ME, CFS or ME/CFS diagnosis, we need to see a psychiatrist, and not to bother real doctors.

 

[Felis Catus]

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.

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?

@rvallee has already formulated it better than I ever could.

 

[hotblack]

I think you have misunderstood my purpose here. I am not intending any extrapolation or generalisation. I am talking about a practical reality that I think advocates could address.

No Jonathan I don’t believe ai have misunderstood your purpose. I think I share the goal, don’t doubt your intentions and am grateful for what you are trying to do. I have been very clear reading what you have said in this thread and in the past. I’ve also I think been clear in my position and have asked that you reconsider one small part of your approach or how it is phrased or presented which I do not think is helpful in reaching our shared goals. I don’t think I’m alone as others seem to agree.

 

[rvallee]

I wonder whether there is a way as a forum we can make a statement to clarify that the issue is not about the reality of any individual's symptoms, nor is it about telling patients that they should not say they have these diagnoses and associated treatments which may be very helpful to individuals, including some forum members. I am pleased for (and even envious of) any individual who has found a treatment that works for them and a supportive doctor.

But I also don't want us to stop discussion of these diagnoses in terms of research evidence, diagnostic criteria, and the impact on advocacy and medical provision for pwME of some of us being given long lists of additional diagnoses and of advocacy organisations promoting the idea that MCAS, hEDS and POTS, FM, IBS, migraine, and even CCI/AAI are all common co-morbidiities of ME/CFS.

That's pretty much the bind here. What is the alternative? Not talking about those issues? Ignoring reality? That's not helpful. They do exist, and in most cases are definitely sometimes a consequence of infectious illnesses, LC has made that obvious, regardless of how messed up everything else about it is.

The only reason there is any research going on about those, regardless of how most of it is lousy, is because they are talked about. Naming is the first step of everything, and no one expects placeholder names to be accurate, except medicine makes things impossible by requiring a pathologically accurate name to begin with. And it might feel that this research is pointless anyway but research is a damn lottery, we never know where the answer is going to be until we get there, so it will always seem pointless until it's not.

Every single negative comment about those things is fully applied the same way to ME/CFS by the vast majority of physicians, who very much also want to never hear anything about it, who dispute the idea that it's a syndrome, who reject the very existence of PEM, and so on. 99% of physicians believe all the same things about ME/CFS, of "chronic fatigue" in general, as what professor Edwards is saying about the other issues.

This idea that ME/CFS has now passed that hurdle and can be separated from the other spurious concepts is very misguided, and frankly no different than the LC communities who tried to distance themselves from anything to do with us. All it takes is careful observation to see how all of this is tied together in some ways, and just because psychosomatic ideologues do everything they can to muddy things up doesn't change anything and shouldn't affect what we do.

 

[hotblack]

On the POTS thing I officially have a POTS diagnosis, from one of the questionable ‘specialist cfs/me’ services and doctors, although on paper supported by a cardiology department. But I don’t think I have POTS, I don’t tend to say I do. But do have OI and something weird cardiovascular… Maybe it is a type of POTS-like thing. How am I supposed to know? 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?

 

[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.