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

[Evergreen]

@Jonathan Edwards,

I should know better than to question your diagnostic descriptions , but did the "chronic widespread unexplained pain" include joint pain? I always assumed the fibromyalgia diagnosis excluded joint pain and was chronic widespread unexplained neuromuscular pain, but I am a lay person who lives in the USA, so I may be way off base.

Oh you've just reminded me of a rheumatologist I saw. Every time I said "joint pain", they would correct me with "muscle pain". "Joint pain" seemed a reasonable way to me to descibe pain in shoulders, elbows, hips, sacroiliacs etc. But no. I wasn't allowed say it.

 

[Jonathan Edwards]

I should know better than to question your diagnostic descriptions , but did the "chronic widespread unexplained pain" include joint pain? I always assumed the fibromyalgia diagnosis excluded joint pain and was chronic widespread unexplained neuromuscular pain, but I am a lay person who lives in the USA, so I may be way off base.

The history of the diagnosis is a grand muddle. Some of the tender points are muscle, some are bony. I don't think there was any consistent conception. (And the tender points were abandoned.)

 

[Verity]

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.

Thanks for the input! I am not surprised to hear that was the conclusion on the test.

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

Yes, definitely, and thanks for the benefit of the doubt—I’m not sure I expressed myself well.

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.

To be honest, I can’t entirely remember what I meant at this point lol, but yes, that was at least part of it. I don’t think it should be controversial, at least. When a diagnosis becomes a fad, all kinds of things are likely to get diagnosed as it! It actually happened to me as a child—very obvious ADHD misdiagnosed as some kind of adrenal problem because I kept complaining that it was fatiguing. Adrenal fatigue was popular then.

I know that ME patients can be understandably very skeptical of individual cases of psychiatric disorders being misdiagnosed as popular diagnoses, and I just wanted to caution that when trying to get through to doctors about our relationship to the hEDS/MCAS/POTS situation, excessive skepticism about things they’ve seen with their own eyes may make some question our version of events.

Quick edit: All that is to say I think it’s more useful to take a “sloppy diagnosis and questionable concepts of certain conditions are hurting everyone” approach, instead of “all patients with hEDS/MCAS/POTS/gastroparesis do not have psychiatric conditions and need their actual organic medical problem to be found.” I get the latter vibe among pwME sometimes.

 

[Verity]

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.

I don’t think it’s the root cause of the attitude—unfortunately a dismissive attitude is just thoroughly human—but it really does not help. The human mind looks for patterns, and if even one family doctor believes, say, MCAS causes neuropsychiatric symptoms and is consequently inappropriately diagnosing it in cases of psych plus GI, some doctors in the local hospital system are going to pick up on a link between symptoms and diagnosis, possibly unconsciously. Even one bad provider in a system can cause some bias like this. It would not be right to generalize based on seeing those supposed MCAS patients, but at the same time it’s a normal thing for the human brain to do.

 

[Verity]

Anyway, I think I’ve made the point I was getting at as best I can, and I don’t want to take this thread off track! I’ll step back from that now.

 

[DMissa]

Maybe someone should tell the naysayers that the 'new reality' is 8 DNA segments and that I have already got some researchers at a highly prestigious lab unit to set up a project on one of them.

Well done.

Many (not all, but many) times I try to encourage this within the existing field I am met with resistance. Too much ego. Broadening horizons has proven productive.

 

[lelelemonade]

I haven’t told a single physician or specialist that I have hEDS, MCAS, or POTS, I haven’t even told most of them I have ME/CFS, but rather simply described my symptoms, and with the exception of one ME-friendly physician who was recommended to me by another patient, the most respectful treatment I got was from a female neurologist who prescribed me GET. The rest of them invariably treated me like a head case. (It wouldn’t excuse their behavior if I did, but I don’t even have a history of mental illness.) And I sought medical treatment in two different European countries. If ME patients are treated the same way in different cultures and at different points in history no matter what they say, I don’t think the argument that “if only we presented ourselves in a more respectable way and didn’t claim to have any ‘fake’ diagnoses we would be taken seriously” holds water. The real reason we’re treated this way, which is medical misogyny, is on display in this thread, as well as the (related) belief that patients shouldn’t have any say in what treatment they get and that the way they narrate their own experiences isn’t worth paying attention to, unless of course you’re looking for an excuse to dismiss them

 

[Trish]

The real reason we’re treated this way, which is medical misogyny, is on display in this thread, as well as the (related) belief that patients shouldn’t have any say in what treatment they get and that the way they narrate their own experiences isn’t worth paying attention to, unless of course you’re looking for an excuse to dismiss them

I'm sorry you have not been listened to or believed by doctors, @lelelemonade. Many of us here share your experience, including me. I'm not sure it's solely down to misogyny, since many of the men among us have suffered similarly, and many of the clinicians that treat us so badly are female. I think it's a wider problem than just how men treat women, though that is clearly part of it, and for some of us may be particularly relevant.

The specific issue this thread is about relates to the situation for some pwME in the UK, and possibly other countries, who have been told by some doctors that they have ME/CFS and also have MCAS, POTS and hEDS.

It's quite possible that for some these are valid diagnoses, but @Jonathan Edwards has explained to us that in his experience these diagnostic categories are not generally recognised as useful labels, partly because the labels attribute biological causes to symptoms that may be incorrect in that patient's case, and partly because some doctors seeing a list of conditions next to the patient's name are likely to assume the patient has a psychosomatic condition and mistreat them accordingly.

This is inexcusable bahaviour by the doctors who should examine the patient and ask questions about symptoms and case history as with every other patient, and provide appropriate treatment for the patient's symptoms. I think what Jonathan is explaining is that while this situation is the case, it may be better for us to protect ourselves from this mistreatment by doctors by avoiding mentioning these other diagnoses and focusing instead on explaining our symptoms and disabilities.

As you rightly say, for many of us, even without being given these extra labels, we are assumed to be psychosomatic cases.

 

[lelelemonade]

I'm sorry you have not been listened to or believed by doctors, @lelelemonade. Many of us here share your experience, including me. I'm not sure it's solely down to misogyny, since many of the men among us have suffered similarly, and many of the clinicians that treat us so badly are female. I think it's a wider problem than just how men treat women, though that is clearly part of it, and for some of us may be particularly relevant.

The specific issue this thread is about relates to the situation for some pwME in the UK, and possibly other countries, who have been told by some doctors that they have ME/CFS and also have MCAS, POTS and hEDS.

It's quite possible that for some these are valid diagnoses, but @Jonathan Edwards has explained to us that in his experience these diagnostic categories are not generally recognised as useful labels, partly because the labels attribute biological causes to symptoms that may be incorrect in that patient's case, and partly because some doctors seeing a list of conditions next to the patient's name are likely to assume the patient has a psychosomatic condition and mistreat them accordingly.

This is inexcusable bahaviour by the doctors who should examine the patient and ask questions about symptoms and case history as with every other patient, and provide appropriate treatment for the patient's symptoms. I think what Jonathan is explaining is that while this situation is the case, it may be better for us to protect ourselves from this mistreatment by doctors by avoiding mentioning these other diagnoses and focusing instead on explaining our symptoms and disabilities.

As you rightly say, for many of us, even without being given these extra labels, we are assumed to be psychosomatic cases.

I didn’t mean to suggest only women are disbelieved by doctors. Medical misogyny has impacted the way all ME/CFS patients are treated. Even going further back in history than the 1970s when ME was reframed as mass hysteria to the beginnings of psychosomatic medicine, we see that men who presented with symptoms of hysteria were ascribed feminine characteristics, and vice versa—“feminine” men (whatever that meant in the eyes of the psychiatrist) were treated as hysteric. So men have suffered from medical misogyny too, whether directly or by proxy.

I share some of those criticisms. And if we’re considering communication strategies at appointments, telling a medical professional you have 5 syndromes considered “medically unexplained” or illegitimate isn’t a smart one. However, my point was that this narrative shared by many people who participated in this discussion that “these people are making us all look bad” and “if only everyone was a respectable patient we would all be treated so much better” is something I wholeheartedly reject.

What gave rise to self diagnosis and the intrusion of alt med into the mainstream medical discourse is a situation where we have a measurable rise in chronic illness and disability rates coupled with austerity and degradation of healthcare systems everywhere. Patients, mainly young women, who are often neglected by the healthcare system no matter what they say or do, are *by necessity* finding ways to describe their experience and get treatment that are outside of what the medical establishment considers legitimate. And to dismiss that as something that isn’t worth investigating or addressing medically *is misogyny*.

And it’s not even true that anything would change once those young women with AuDHD blue hair and perhaps even pronouns who are “making us all look so bad” are finally bullied into silence.

We can criticize the science behind MCAS and co. without entertaining fatuous ideas about how better everything would be if women would just behave. The reason we’re not getting care is systemic failure and that’s not going anywhere.

 

[Jonathan Edwards]

However, my point was that this narrative shared by many people who participated in this discussion that “these people are making us all look bad” and “if only everyone was a respectable patient we would all be treated so much better” is something I wholeheartedly reject.

As do I. But I have not seen that narrative here.

 

[Felis Catus]

What gave rise to self diagnosis and the intrusion of alt med into the mainstream medical discourse is a situation where we have a measurable rise in chronic illness and disability rates coupled with austerity and degradation of healthcare systems everywhere. Patients, mainly young women, who are often neglected by the healthcare system no matter what they say or do, are *by necessity* finding ways to describe their experience and get treatment that are outside of what the medical establishment considers legitimate. And to dismiss that as something that isn’t worth investigating or addressing medically *is misogyny*.

It's worse than that. Many of us who got those diagnoses in the UK, got them from the doctors who (also) work for the NHS. POTS is being diagnosed by the NHS cardiologists during their NHS appointments, not just privately.

EDIT: typo

 

[Verity]

I don’t think the argument that “if only we presented ourselves in a more respectable way and didn’t claim to have any ‘fake’ diagnoses we would be taken seriously” holds water.

I don’t know that anyone here is saying that. All I’ve seen is some of us saying the diagnoses likely make the situation worse in some ways, not that they cause it.

 

[Trish]

I agree POTS does seem to be more recognised in the NHS than the other 2 mentioned.

I think this whole subject area is fraught with misunderstandings and it is all to easy for any of us to say things in ways that can be misunderstood or differently interpreted by others.

Forum discussions are not easy. I'm glad you raised your concern, @lelelemonade. From what you say it seems there is some misunderstanding.

I'm sorry if I haven't been clear in my posts. My intention on this thread is to try to clarify why problems are arising for some very sick people, and to discuss ways those problems could be reduced. I don't see anyone blaming patients who are trapped in the middle of horrible situations. What I do see is serious concern about patients being harmed at least in part by disputes between doctors over diagnoses and what they mean.

 

[lelelemonade]

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.

The patient community needs to dig itself out of this hole if we are to get any clinical service.

Then how should I interpret those statements? It sounds like that’s what you’re saying. The reason why I came across this thread is because participants of this forum were making the “they’re making us all look bad” argument on reddit, using those exact words and citing you. I’m not saying you’re responsible for their behavior but if this is the kind of action this framing of the problem inspires we should question whether it’s productive to hold the patient community responsible for medical negligence, because in my opinion it would only lead to pointless infighting.

I often wonder whether these were a different lot of people from those on this forum - maybe with an entirely different sort of problem.

I for one think that those people aren’t a “totally different lot” from the respectable s4me user and are equally deserving of medical care regardless of what acronyms they use to describe their symptoms. And if many people reporting hypermobility and linking it to their pain and fatigue, well maybe the medical system might do something about that, whether or not they’re really linked to hypermobility, instead of dismissing them outright?

 

[Utsikt]

Then how should I interpret those statements?

Those statements are about «people that perceive themselves as advocates» that constantly bring up fringe and pseudoscientific muddle.

Advocates as in people that have taken it upon themselves to speak on the behalf of a group, or that take it upon themselves to share «facts» with others about topics which they don’t have an adequate understanding of.

 

[lelelemonade]

I'm sorry if I haven't been clear in my posts. My intention on this thread is to try to clarify why problems are arising for some very sick people, and to discuss ways those problems could be reduced. I don't see anyone blaming patients who are trapped in the middle of horrible situations. What I do see is serious concern about patients being harmed at least in part by disputes between doctors over diagnoses and what they mean.

I don’t have a problem with anything you said or how you moderate this thread. I admit that my response was affected by the broader debates around self diagnosis and ‘questionable’ diagnoses, as well as by the fact that what those people I mentioned said on reddit was extremely abrasive and discriminatory.

But the elephant in the room here is that those labels we’ve all been discussing are mostly claimed by young women and that has a lot to do with negative physician and community attitudes towards them. Idk what exactly happened at UCLH but there’s no way this wasn’t a major factor. And since physicians are rarely at a loss when it comes to coming up with excuses to dismiss women’s suffering I highly doubt this problem could be fixed by patients behaving differently.

 

[Braganca]

Then how should I interpret those statements? It sounds like that’s what you’re saying. The reason why I came across this thread is because participants of this forum were making the “they’re making us all look bad” argument on reddit, using those exact words and citing you.

Can I just say.. There’s already been a lot of going around in circles on this thread. People getting offended by what Jonathan has said, and then Jonathan re-explaining and reiterating his thoughts again. I think if you read back a few pages it might help.

 

[Jonathan Edwards]

Then how should I interpret those statements?

As they are written, I hope. Which is not:

to hold the patient community responsible for medical negligence,

It is bound to be a sensitive issue but when I re-read what I wrote think my position was made clear.

Perhaps I should put it from a slightly different angle. I do not hold the vast majority of patients and carers responsible for causing problems, but there patients and carers who repeatedly put messages out on the net that repeat pseudoscience and have reason to think these cause a lot of harm. In particular I think they cause harm in relation to very severe cases, some of whom are dying. The harm comes at least in part by the aggravation of lack of communication and trust that arises when health professionals question beliefs about the illness that patients and carers have acquired through these channels.

There are also back channels of groups of carers who propagate these pseudoscientific theories and put themselves forward as advocates for others.


I am well aware of the antagonism on forums like Reddit. Very early on when I joined Phoenix Rising and became a board member I got to see just how abusive and manipulative some of the individuals involved could be. Some very dishonest activity went on - which is basically why this forum exists now.

I for one think that those people aren’t a “totally different lot” from the respectable s4me user and are equally deserving of medical care

They may well not be - that was just a thought. There may well be a spectrum. And there was no suggestion that anyone did not deserve medical care. That sort of inference seems to me uncalled for. I wouldn't have spent hours every day for ten years on these forums if I wasn't genuinely tryng to help solve the problem for everyone diagnosed with ME/CFS.

And if many people reporting hypermobility and linking it to their pain and fatigue, well maybe the medical system might do something about that, whether or not they’re really linked to hypermobility, instead of dismissing them outright?

Again I see this as uncalled for. What are we supposed to do something about? I have followed the hypermobility literature for 50 years now. I see no good evidence for hypermobility being a cause of general symptoms and there are quite good epidemiological studies indicating that it isn't. I have taken time to study the evidence and what I see are ungrounded claims made by physicians, many of whom I know well, who have no real understanding of how you do medical science.

Nobody is dismissing anybody, I am just doubting that these 'co-morbidity' diagnoses are of any use to anyone. It doesn't even make any sense to bring in these other diagnoses. If someone has ME/CFS, which is a syndrome that includes symptoms that broadly fall under 'fatigue' how does it help to give the another label that is also supposed to be an explanation for fatigue? And then another, and another?

I hear people talk of these labels being 'validating' and I can understand why people would want that, but if it gets in the way of turning ME/CFS into a normal medical condition treated like any other as a serious life problem and keeps it in the realm of make-believe surely that is too much of a price for everyone with ME/CFS to pay?

 

[Jonathan Edwards]

But the elephant in the room here is that those labels we’ve all been discussing are mostly claimed by young women and that has a lot to do with negative physician and community attitudes towards them. Idk what exactly happened at UCLH but there’s no way this wasn’t a major factor. And since physicians are rarely at a loss when it comes to coming up with excuses to dismiss women’s suffering I highly doubt this problem could be fixed by patients behaving differently.

I disagree. This is an issue that affects young women because ME/CFS is common in young women. Young women are normally more hypermobile than men or older women. The labelling as 'hEDS' was done by physicians who took these people seriously. It then became a problem for other physicians who could see how unfounded the label was. I cannot actually see what you are arguing there.

The physicians involved spend the vast majority of their time looking after women and taking them seriously - whether with rheumatoid, lupus or other joint pain in the elderly - all rheumatology clinics have a heavy female weighting. The idea that they 'dimiss women's suffering' is ridiculous. Why am I, as a physician from that department, here at all? The idea on this forum is to have some evidence for claims and I don't see any evidence here, just political dogma, to be honest.

I will go on doing my best to advocate for ME/CFS as something that should be treated as a real disease. I appreciate that some people are sensitive about any critique of the advocate community but nobody is perfect and I personally think that the adage 'first do no harm' applies to all of us, not just doctors.

 

[forestglip]

Would this very brief summary of your thoughts, @Jonathan Edwards, be accurate and maybe clear up some confusion?

"If you think you have MCAS or hEDS, and you think telling your doctor might help improve your care, then feel free.

If you want to convince others they may have MCAS or hEDS, maybe reconsider."