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

[Holinger]

The references to medical units being shut down and that patients should not be seen with ME/CFS is literally the saddest post I have ever read on this forum. It is believable but all can be hoped is that it is in the past and BPS propaganda has had a light shone on it and will not go unchecked again. I can only hope. This is probably optimistic.

 

[ryanc97]

On a side note, this also generalizes to LC vs ME debate. There are people with ME symptoms that identify as LC with no acknowledgement of ME. And LC solution is to trial as many antivirals as possible.

 

[ChronicallyOverIt]

Just to clear my definitions, so I can grasp how these “syndromes” are already defined. If I were to bring these symptoms up to a doctor what would be the correct way?

POT(s) already is covered by orthostatic intolerance. What would you say a “MCAS” patient would say, food intolerance, spontaneous uritica, and angioedema? My general understanding talking to MCAS patients is that they are constantly battling hives and food intolerance? I’m completely out of the loop on EDS and hEDS….

 

[hotblack]

No, sorry, doctors have said, and written down, that they think their department should have nothing to do with a group of patients because of the way those patients behave.

And they are quite likely lying to you and themselves. Please read my posts, but I’ll repeat this:

Doctors aren’t changing their mind and denying care because of patients spouting woo, it just gives them cover for something they believed anyway. That these patients should be ignored.

A lot of us can agree that the other diagnoses and general woo are unhelpful in trying to communicate the messages we here at S4ME try to. They muddy the water and make our job harder. I’m all for taking that message to people, to Sonya. I have tried to communicate it to AfME too.

The anecdotes and implicit or explicit acceptance that doctors are neglecting us because of us and if we change our behaviour that will change is where I see problems. Surely you can see that, especially given the history of ME/CFS?

It devalues rather than strengthens the argument and pushes people away. It is at a minimum unnecessary and quite possibly baseless, I am asking that you consider this and consider dropping it.

 

[Jonathan Edwards]

And they are quite likely lying to you and themselves. Please read my posts, but I’ll repeat this:

Doctors aren’t changing their mind and denying care because of patients spouting woo, it just gives them cover for something they believed anyway. That these patients should be ignored.

Sorry, but this is not the case. I know because the conversations went on around me for a decade or more. I wa right in the middle of it. At the last meeting where it was openly discussed, it was explicit. There were strange inconsistencies in what was being said (for some reason the 'hEDS' clinic was allowed to continue but people with 'CFS' were not allowed to be seen), but we are all familiar with that sort of doublethink.

This is maybe an unusual situation in an academic rheumatology department that at one time was world renowned for innovative research. It is the sort of place that should be pushing forward research into ME/CFS. So it gets a different sort of referral pattern. But these are the departments that need to see the need to focus on ME/CFS. This is where the work we want to be done has to be done.

all can be hoped is that it is in the past and BPS propaganda has had a light shone on it and will not go unchecked again

And it is the current situation, but I can go on hoping that next time I give a seminar on ME/CFS I do not find it boycotted by the entire rheumatology section bar one or two old colleagues who worked with me on B cells.

I am not making this up guys.