Unless we want to claim that whilst our condition is legitimate, pwPOTS or MCAS are imagining theirs? I don't think that helps anybody, even if we might disagree on how to categorise POTS/OI, or the allergic type symptoms many pwME and (pwLC without PEM) experience.
No one here is suggesting that people are imagining their health condition, I'm certainly not, quite the opposite. We can criticise labels and hypotheses of causal mechanisms without suggesting that people aren't really ill.

There are legitimate problems with the MCAS label. It's not at all clear what it means. If someone thinks they know, please read our MCAS thread and then tell us on that thread. One issue with MCAS is that it provides a mechanism for the symptoms - in which case there needs to be evidence to support that mechanism. In contrast, ME/CFS is just a label for a recognisable pattern of symptoms. We aren't claiming to know the cause. When I looked into the MCAS literature, it didn't seem to hold together.

With POTS, my main questions are how relevant it is to ME/CFS and how reliable/repeatable the test results are. For sure, we have orthostatic intolerance. I think there is a pattern of increased heart rate, and possibly a pattern of the body trying to cope with an inadequate supply of blood to the heart and brain when upright, although fainting doesn't seem to be a typical part of ME/CFS. Repeated studies have not found anything like 70% of people with ME/CFS having POTS and we don't have good evidence that POTS treatments help us. There is confusion between POT and POTS, there is confusion about definitions. Things are not as clear as I once thought.
 
From #MEaction Facebook:

Want to know what is happening with RECOVER-TLC, aka NIH’s Long COVID research program?
Well, this is not surprising but still very demoralizing. $1.15B and absolutely nothing to show for it, and nothing they describe here convinces otherwise. The NIH has completely dropped the ball here, and they can't use RFK Jr as an excuse, they started it all wrong and haven't put in the effort.
 
Unless we want to claim that whilst our condition is legitimate, pwPOTS or MCAS are imagining theirs? I don't think that helps anybody, even if we might disagree on how to categorise POTS/OI, or the allergic type symptoms many pwME and (pwLC without PEM) experience.
FFS, nobody is saying that.

That kind of response is just doing the psycho-behavioural club's dirty propaganda work for them. They love to claim that we are dismissing patients with the FND label, for a recent example, as not having a 'real' illness/disease, just because we critique the FND concept and label that is being used to (mis)characterise their problems. It is a smear job, a standard deflection and misdirection technique, used by politicians and con-artists all the time to avoid having to address the actual criticisms and questions, to avoid legitimate scrutiny and accountability.

I have been watching and involved with ME/CFS stuff for over three decades, and I have never seen ME/CFS patients dismiss any other group of patients in the way you say.
 
Back
Top Bottom