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.