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

[ScoutB]

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:

There are many people who encounter S4ME and feel very attacked by what is said here - that few of these join or comment is to be expected.

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.

 

[Formerhuman]

He had to do the same with me, because I saw him before I knew any better than to trust the associations and their favourite practitioners.

Does your doc prescribe any meds for people with OI?

 

[Utsikt]

No matter how it is said, there will be push-back because it’s difficult to communicate and take in the nuances. But we won’t get anywhere by not calling it quackery if it is quackery. You don’t see domestic violence websites shying away from calling something abuse.

Gifts can be a nice and loving gesture. They can also be used as manipulation in an abusive relationship. Getting treatments from a doctor can be nice. Getting quack treatments from a doctor is not a good thing, even if it might feel nice to feel someone is looking after you. In reality, they are being taken advantage of in one way or another.

 

[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..