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

[Spartacus]

When I told my nurse practitioner that I had ME, I was dismissed with "oh, we don't see much of that these days". Well why is that then ? Presumably because everybody is now being told they have POTs, MCAS, EDS etc. All of which are experienced by people with ME.
This is a cunning way of hiding the fact that there are so many people with ME, and none of us have ever been cured by the useless psycho babble rubbish.

 

[Jonathan Edwards]

Well why is that then ?

I think most likely the local GPs have gone over to using 'chronic fatigue syndrome'.

 

[Kitty]

"oh, we don't see much of that these days". Well why is that then ?

Well, partly because people with ME/CFS know that discussing it is not only a dead loss, it might mark their card in a way that affects how medical professionals view any symptoms they present with.

I haven't mentioned it in at least 10 years, partly because there's nothing they could do anyway, but also because I've got one eye on the fact that I'm now of an age where people are more likely to get diseases like cancer. I don't want any filters being applied if I develop symptoms that I know aren't typical for me.

 

[Yann04]

Well, partly because people with ME/CFS know that discussing it with medical professionals is not only a dead loss, it might mark their card in a way that affects how medical professionals view any symptoms they present with.

And those who are too severe to avoid mentioning it tend to be too severe to have much contact with the medical system outside their GP

 

[hallmarkOvME]

The problem is that that very desire to have the illness seen as biological plays right into the hands of the BPS crowd. To the extent that EDS has now been adopted by gastroenterologists as an especially 'functional' disorder - in other words entirely imaginary but we must say it is real, or whatever double think they prefer.

MCAS may sound 'biological' but to a physician it just sounds pseudoscience. And people with ME/CFS are deliberately being excluded from a physician led service because they keep insisting they have these pseudo-diseases. As soon as a mouth is opened and MCAS and EDS are mentioned you are in the functional pigeonhole where feeding support is not good management.

If we think someone has food intolerance we can just call it food intolerance. Adding a special syndrome is where the make-believe comes in. And if it is part of ME/CFS it doesn't need another syndrome because it is already part of one with a meaningful definition. It is vanishingly unlikely that there are so many people with four unrelated syndromes together (MCAS/POTS/EDS/ME/CFS) when as far as we know there is no biological or epidemiological evidence for a link. Yet so many people have been told they have all these diagnoses.

I may be misguided but it seems that in the UK it is me that has the job of trying to persuade physicians to begin taking ME/CFS seriously again. I have managed to get lab researchers interested - that was remarkably easy. There was no hesitation. But persuading physicians is going to need a very persistent and well organised campaign. As long as advocacy groups keep talking in pseudo-biology terms I think I am probably scuppered.

ME/CFS is a real biological problem.
Food intolerance is a real problem. It probably involves mast cells somewhere along the line but then pretty much any tissue reaction does so calling it a mast cell problem just muddles things.
EDS is a real biological problem but hEDS is not - it has no useful meaning.

The patient community needs to dig itself out of this hole if we are to get any clinical service. To some degree it has, but judging by what I have heard in terms of responses to our Fact Sheet 3 there are still a lot of people out there who cannot see the wood for the trees.

BPS? Biopsychocial?

What do you mean by "biological"?

Why does a disease have to be biological to be treatable? Or have a biological "foundation"?

 

[Utsikt]

BPS? Biopsychocial?

What do you mean by "biological"?

Why does a disease have to be biological to be treatable? Or have a biological "foundation"?

Biological means physical. And because everything is physical, everything is biological.

 

[hallmarkOvME]

Biological means physical. And because everything is physical, everything is biological.

Everything is physical only to physicalists. So non-physicalista are shit out of luck?

 

[Kitty]

What do you mean by "biological"?

Not the result of negative thoughts.

 

[Jonathan Edwards]

BPS? Biopsychocial?

Yes.

What do you mean by "biological"?

It depends on the noun being qualified, and also who is using it, and so varies in the 5 cases in my post.

All disease is biological, but a lot of people contrast biological with 'psychological'. There is a widespread confusion between psychiatric and 'psychological' which complicates this further. People are usually contrasting with psychological in the sense that there is nothing wrong other than thinking that something is wrong. The same people will accept that psychiatric disease like schizophrenia is biological in the sense they want, but the muddle remains a problem. They don't think their problem is psychiatric either but if it affects the mind that may be a moot point.

The indisputable problem is that the psychiatrists who decided to take charge of ME/CFS were incompetent.

Why does a disease have to be biological to be treatable? Or have a biological "foundation"?

As Utsikt says, the question does not arise because biological just means to do with living things and we are living things. So all disease must be biological. I wouldn't personally talk of physical because to me something physical is just an event that actually happened rather than something that might happen. Other people (especially philosophers) use the term in ways that don't make a lot of sense to me (and give rise to things like people wanting their disease to sound biological or physical).

 

[Utsikt]

Everything is physical only to physicalists. So non-physicalista are shit out of luck?

My position is that you’ll have a hard time arguing for consciousness as something that is not of the same realm as the biological, but that is a discussion for this thread (so we keep this one on track).

 

[NelliePledge]

I think most likely the local GPs have gone over to using 'chronic fatigue syndrome'.

I was explicitly told by a GP in her 30s in 2015 - we prefer not to give that diagnosis (CFS) it is better to treat the symptoms- so some are trying to avoid it altogether - anxiety, depression etc etc

 

[V.R.T.]

I was explicitly told by a GP in her 30s in 2015 - we prefer not to give that diagnosis (CFS) it is better to treat the symptoms- so some are trying to avoid it altogether - anxiety, depression etc etc

This is the approach that all GPs took with me and that eventually destroyed my life and functioning. That was in the UK 2017-2020

 

[Jaybee00]

Also see this post

Post in thread 'Very Wealthy people’s charities — News, Advocacy Ideas etc.'
https://www.s4me.info/threads/very-wealthy-people’s-charities-—-news-advocacy-ideas-etc.39165/post-664944

It is vanishingly unlikely that there are so many people with four unrelated syndromes together (MCAS/POTS/EDS/ME/CFS) when as far as we know there is no biological or epidemiological evidence for a link. Yet so many people have been told they have all these diagnoses.

Greg Brockman’s (likely billionaire from Open AI) wife has these plus autism minus ME/CFS.

He obviously has access to the best doctors in the world and his wife still ends up with this diagnostic mish-mash.

I’m guessing she has ME/CFS but was given these additional diagnoses to make it sound more “scientific” and/or to avoid the “embarrassment” of an ME/CFS diagnosis.


https://www.s4me.info/threads/very-...s-—-news-advocacy-ideas-etc.39165/post-664944

 

[ryanc97]

I am also quite confused by the link with autism, this auDHD thing, and neurodivergence things.

It seems to me alot of people on social media who identify as ME also put that stuff in their bio. I'm not sure what to make of it.

I had none of that before getting hit with it overnight. I'm not sure if the correlation is reverse, aka people with ME tend to end up having ADHD.

 

[hallmarkOvME]

It occurs to me that the situation in the UK and the USA may be quite different.

If my experience with this forum is any indicator, it is, but not quite in the way you suggested.

When confronted with a patient with ME/CFS who also says they have been diagnosed with MCAS, hEDS, and possibly also POTS, FM, IBS etc...

In my case, the same private practice physician that diagnosed with me ME/CFS also diagnosed me with MCAS and hEDS, in the same two hour visit. When my public, teaching univerisity GP was informed, the ME had already been suspected by both of us, so it was a diagnostic win; but him getting on board with the MCAS and hEDS took a lot of educating on my part and in consult with my PPP, and now he's happy that she's on board so he dosen't have to deal with it.

...I imagine these scenarios:

The USA doctor thinks, great, lots of drugs I can try with this patient, lots of consultations, lots of money.

The UK doctor thinks, this person is nuts. They need psychotherapy.

I've seen my PPP three times, early on. My insurance reimbursed half. All consultations after that have been free via messaging. She's never once tried to get me to make more appointments with her.

And my GP works at a place where these money issues just aren't a factor. They're overworked and understaffed. They'd rather you refer out like I He never tried to gaslight me either.

 

[hallmarkOvME]

The thing that I see needing to change is the message put out by the advocacy groups. I saw a document proposing a political party policy of ME/CFS that mixed it in with MCAS, POTS, Long Covid and whatever.

Weird. I had to go outside my hEDS advocacy groups here to find this forum. They don't talk about ME/CFS much. They take it's legitimacy for granted.

 

[hallmarkOvME]

I doubt that the factsheet is being greatly apprec iated on Twitter. I suspect it is being looked down upon as being dismissive and that Tweets of MCAS/microclots/hEDS are more popular. At least that is my understanding.

I was glad to find the Fact Sheets here, and glad that @Jonathan Edwards shared his opinion of the best diagnostic criteria lists. The combination was instructional and corroborating.

Which advocacy groups are y'all talking about?

 

[hallmarkOvME]

....make-believe memes from fringe physicians...

I have never seen or heard of this here in the States. Could you provide some examples of these "memes" and some names of these "fringe" physicians?

 

[Braganca]

I often wonder whether these were a different lot of people from those on this forum - maybe with an entirely different sort of problem. My experience was also no doubt skewed by taking the place of a great expert, with referrals from across the country. But I think there is a difference. Cancer advocacy groups do not talk mumbo jumbo like 'complex multisystemic disease' with 'comorbidities x, y, z'. There is a specific problem. It may well reflect the absence of treatment but there is an absence of treatment for quite a few other diseases. Maybe mostly it reflects an absence of biological knowledge. And to get that knowledge we need physicians to look after patients long term and to get that we need to find the path of least resistance.

No, it’s not different people. The majority of patients I’ve ever spoken to on Twitter or Reddit believe this stuff is legitimate. it’s because people are embarrassed to say they have ME or CFS or ME/CFS. They want to add a bunch of what they perceive to be more legitimate sounding labels to their illness in the hope they’ll be taken seriously. Nobody understands the backfiring that you describe and they believe the quacks online who give credence to these labels. It’s just a big circular mess which I only see being solved when we get further with SequenceME or other research.

 

[V.R.T.]

it’s because people are embarrassed to say they have ME or CFS or ME/CFS. They want to add a bunch of what they perceive to be more legitimate sounding labels to their illness in the hope they’ll be taken seriously. Nobody understands the backfiring that you describe

This is precisely why I think coming down really hard on patients who believe this stuff is a mistake. It's caused by the stigma and is a way to claim a sort of legitimacy and control over their situation. Why wouldn't they believe the doctors who believe them and tell them about all the conditions they have?

Telling them they're all completely deluded and it's their fault doctors don't take them seriously is just going to make things worse.

It's a difficult situation because it's very hard to see a lot of people dropping the biobabble without solid biology to replace it with. And a lot of advocacy spaces e.g. cfs subreddit are much more pessimistic about the possibility of a breakthrough in the near future (or at all) than this forum is. Many think treating their comorbidities and getting symptomatic relief and improvement is as good a treatment as they'll ever get.

To say nothing of the fact that many people get some benefit from OI meds/antihistamines and saying MCAS and POTS are make believe sounds like a threat to take them away.

I think expecting pwME to be perfect little patients is unlikely to go down well when being perfect little patients who listened to what their doctors said led to a lot of us deterioating badly.