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

[DHagen]

I'm not sure if you read my paragraph? I don't think our biggest problem is that lay people believe the pseudoscience. And, no, I don't think lay people should have to be experts in their own disease. I guess I was trying to push back against the 'lay person can't identify pseudoscience/medical professional can' dichotomy. The reality seems more complex than that.

I did read your paragraph. You wrote:

(And frankly, I agree that it's usually pretty easy to make a good guess about what is and isn't pseudoscience, for a bullshitometer to turn red, although being completely certain is a lot harder.)

In addition to the comments by @Jonathan Edwards, I was responding to your agreement that "it's usually pretty easy to make a good guess about what is and isn't pseudoscience."

While it can be easy to think a treatment sounds unlikely, the inability to be completely sure that something is pseudoscience is diabolical for people who are utterly desperate for some improvement. We often see on the forum that people thought some treatment sounded unlikely, but with their doctor, let alone the Mayo Clinic, promoting the therapy, and the desperation to be well, they gave it a go anyway.

I do not have a diagnosis of POTS or hEDS or MCAS, though I know many people who do. I do not know if these labels have any utility - I am able to appreciate that the labels are misleading or even counterproductive because they suggest a particular mechanism that may not be relevant to understanding the underlying pathology. That's fine. For people who are suffering, if these labels are done away with, they need to be replaced with something. I have not seen any viable alternatives suggested. That's something that can be worked on. That is terrible, but it may simply be where we're at.

I still take issue with the idea that it is easy to tell that these diagnoses are "imaginary," "pseudoscience," or "quackery." When confronted with how upset some people have gotten in this thread, the response has been that "no one is blaming patients." To me, stating that it is easy to tell that these concepts are "ridiculous" either puts blame on patients for accepting these diagnoses or implies that the only reason the patients cannot be blamed is because they are self-evidently too stupid to have figured it out.

That referring to hEDS patients as "the bendy people" who can be dismissed as full of shit on the basis of some instinct apportioned only to those privileged few who hail from Yorkshire should be understood as an expression of contempt should, I would hope, go without saying.

Looking over the information provided by the Cleveland Clinic (which I cite not because they hold some special authority or are even a worthwhile institution when it comes down to it, but because patients in the US will commonly be directed by their physicians to their resources) for Ehlers Danlos Syndrome and POTS, I am still not certain at what point it is meant to become obvious that this is "pseudoscience." Especially when compared with decsriptions of ME/CFS and the fact that that's the one I am supposed to accept as valid. Except for all of the bits that are also pseudoscience, which are easy to pick out.

 

[Hutan]

To me, stating that it is easy to tell that these concepts are "ridiculous" either puts blame on patients for accepting these diagnoses or implies that the only reason the patients cannot be blamed is because they are self-evidently too stupid to have figured it out.

I've thought a lot about what you have written.

I've searched this thread, and no one has used the word 'ridiculous' to describe the MCAS, hEDS and POTS diagnoses. I don't think anyone here would want to suggest that a patient believing in any of those diagnoses is stupid or they are to blame for accepting them.

For one thing, ideas can look plausible. Even if parts of an idea are in fact ridiculous (such as the originator of the idea having a background in tarot card reading or believing mast cells cause spontaneous combustion), some parts can remain plausible. As I've said, even though someone who has spent a lot of time looking at these ideas may be able to quickly see some of the problems with them, it can be hard to completely rule out all aspects of an idea.

There is nuance - someone really can have orthostatic tachycardia, someone can have food sensitivities, someone can be flexible. The problems, the uncertainties, come at the next step - so what does that mean about the cause of the disease and about the treatment? My joints are flexible, I could get a diagnosis of hEDS if I wanted one - but does the flexibility mean anything in the context of my ME/CFS? My son, who got ME/CFS at the same time as me, who has much the same symptoms, is not flexible.

Circumstances matter a lot. If someone we trust is telling us something, and especially if we want something to be true, it can be easy to believe it, no matter how clever we are. Wanting to be well in order to keep your job, your family, your plans, your identity is a strong reason to believe something.

It isn't reasonable to expect most patients to put a lot of time in to evaluating ideas related to their illness or to developing the knowledge needed to do the evaluation well. They have to decide who they trust. And that's where the patient charities and the commentators come in - we need them to be a lot more cautious about promoting ideas and treatments than they have been. They have to be worthy of the trust patients put in them

If someone is going to offer advice and influence others, in my view especially a clinician, they do need to put time into being sure about what they say. Unfortunately, when it comes to our illness, it's not enough to see that the person speaking comes from the Mayo Clinic or Harvard University, a lot more work has to be done.

For me, it's not about saying 'nothing about this idea can possibly be true and you are stupid to believe it'. It's more about looking at what we know and concluding that there isn't enough evidence for a responsible person to say about someone with the constellation of symptoms 'I know what is causing your disease and I know how to treat it'. As you say @DHagen,

I am able to appreciate that the labels are misleading or even counterproductive because they suggest a particular mechanism that may not be relevant to understanding the underlying pathology.

That is exactly the point. You've nailed it.

Looking over the information provided by the Cleveland Clinic (which I cite not because they hold some special authority or are even a worthwhile institution when it comes down to it, but because patients in the US will commonly be directed by their physicians to their resources) for Ehlers Danlos Syndrome and POTS, I am still not certain at what point it is meant to become obvious that this is "pseudoscience." Especially when compared with decsriptions of ME/CFS and the fact that that's the one I am supposed to accept as valid. Except for all of the bits that are also pseudoscience, which are easy to pick out.

Yeah... But the difference is that ME/CFS is a list of symptoms. Its validity should be in the lack of claims about causation and, currently, about effective treatment. I think the main pseudoscience of hEDS (importantly not EDS which are proven genetic diseases) and POTS is in the certainty of causal mechanisms and in the creation of disease entities out of symptoms that have many causes.

That Cleveland Clinic muddles up EDS with hEDS. It suggests that all 'hEDS' is caused by genetic mutations affecting collagen, but that just isn't true. Someone can have particular loose joints for many reasons. It makes no sense to talk about someone who is quite flexible and some other symptoms that may but probably are not related to the flexibility and someone who has a life-threatening genetic mutation in the same article. I expect hEDS is quite a money-spinner for the clinic.

The Cleveland Clinic suggests that it can get people on the 'path of recovery' from POTS. Then they say there is no cure but offer treatments including talk therapy, biofeedback, exercise and nutrition guidance including increased salt intake. They say 'we work with you to create a treatment program that works for you'. They say 'Studies show that reclined aerobic exercise, such as swimming, rowing and recumbent bicycling, has the best results. Strengthening your core and leg muscles is also helpful.'

 

[DHagen]

Thank you for taking the time to respond at such length, @Hutan.

I've searched this thread, and no one has used the word 'ridiculous' to describe the MCAS, hEDS and POTS diagnoses.

This is true, and the scare quotes that I used muddied the waters in this regard. Other pejorative terms have been employed, however. In my mind, "woo" implies a degree of ridiculousness in as much as it designates something deserving of ridicule.

I don't think anyone here would want to suggest that a patient believing in any of those diagnoses is stupid or they are to blame for accepting them.

This, or something very similar, has been stated multiple times. To me, this claim rings hollow when it is followed up with statements indicating that it is easy to identify these concepts as being "imaginary," "pseudoscience," or "quack medicine" (all terms that have been applied to the diagnoses under discussion). That a repeated inability to correct make an easy identification equates to stupidity was my inference.

I also object to the usage of demeaning language with reference to patients.

I agree with a great deal of what you've written. As I indicated, I have come to appreciate the problems with these terms and with the way that they are used - that's thanks to the discussions here on S4ME. I am not arguing against the criticism you voice here (and I am certainly not defending the Cleveland Clinic). I referenced the Cleveland Clinic's documents because, without any additional research, I found nothing there that I would expect a lay person to identify as pseudoscience at first brush, and thus would neither blame them for accepting the diagnosis nor with failing to have spotted an obvious flaw. The argument is not that there are no flaws, merely that the flaws would not be obvious to someone newly diagnosed. They were not easy to spot for me. Maybe that's my failing.

My larger purpose in writing was to again call attention to what I, and I think others, perceive as a degree of contempt and disdain for the patients (here thinking particularly of patients with a diagnosis of hEDS, MCAS, or POTS without having also received a ME/CFS diagnosis); contempt and disdain which continue to manifest despite all of the professions of good intentions. This came up at the start of this thread, it was hashed out, and then nothing much changed.

Maybe I am being over sensitive. I can say that, whatever the intention, the people that I have tried to convince to read the discussions on this forum have come away feeling hurt and attacked, to the extent that it has changed the way that they interact with me. At the same time, I recognize that this is a long standing community, and asking people to constantly police their language in ways to which they are unaccustomed and to constantly reiterate positions that they have expressed multiple times over the years is not going to be especially conducive to discussion amongst the long-standing members.

I suppose the ground has been covered and seems unlikely I've added much value here, so I'll stop. Thanks again for responding.