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

[Jonathan Edwards]

Oh no doubt, but in my experience people with ME/LC who talk about MCAS and stuff are quite vehemently against the functional paradigm.

That is because they have been told how doublespeak it is. What they have not been told is how doublespeak MCAS is.

To play devil's advocate, this is what they think about ME/CFS too.

Yes, but what they think is not relevant to the distinction between ME/CFS, a useful pragmatic term, and the others which are unusable or misleading because they invoke unproven theories and have diagnostic ascertainment uncertainties around a hundred-fold.

This to me shows clearly how dangerous the psychobehavioural cult has gotten.

Sure, but the biomedicobabble cults are just as dangerous - with people dying from complications of neck surgery and sooner or later from the complications of misguided apheresis or anticoagulation.

 

[V.R.T.]

Sure, but the biomedicobabble cults are just as dangerous

The Born Free protocol and CCI stuff are dangerous absolutely, but nowhere near as dangerous as the fact that it is NHS policy, and the policy of countless other health systems, to treat everyone with MECFS symptoms in a way that will make them sicker, and when they get really sick, abandon them or worse section them, and let them starve to death in hospital rather than acknowledge their illness.

I don't think that the MCAS and POTS stuff can reasonably be compared. I think the issue there is more with the story they tell about the symptoms - unproven and probably wrong biological explainations and not properly tested treatments and the like.

 

[Jonathan Edwards]

I think the issue there is more with the story they tell about the symptoms - unproven and probably wrong biological explainations and not properly tested treatments and the like.

Isn't that the same for BPS?
From where I stand the whole thing is a lot more complicated. Each problem is a bit different, for sure, but the principle of trying to minimise iatrogenic harm applies generally.

The Born Free protocol and CCI stuff are dangerous absolutely, but nowhere near as dangerous

I think in ten years time we will see just how dangerous the CCI stuff is. There will be dozens of unnecessary deaths, including suicides in people who cannot tolerate where they ended up.

 

[V.R.T.]

think in ten years time we will see just how dangerous the CCI stuff is. There will be dozens of unnecessary deaths, including suicides in people who cannot tolerate where they ended up.

I agree. I was talking more about the scale of harm than individual cases. I am very glad I discovered S4ME when I did because I can see myself having gone down that route if I hadn't.

 

[bobbler]

If only it were that simple. I have met people who cling to the label of 'FND' and they see it as just as concrete - not realising that they are supposed to think that while the doctor is thinking the opposite. I have no idea what the doctors who offer MCAS or CCI have in mind (except maybe dollars).

And although it might seem that for the doctors there is a distinction it turns out there isn't. The recent advise on not feeding people with functional diseases from the British Society for Gastroenterology gives the most common example of functional disease as EDS. Somehow even doctors seem to believe both that this is concrete physical laxity and all in the mind. Everybody is completely muddled about what they mean. Peter White of the PACE trial was happy to include hypermobility in his biopsychosocia model. The Bragee centre writes papers on both neck pathology and psychological woo. I wouldn't be surprised if the MCAS people didn't believe you can control your mast cells with your mind. The whole thing is a bizarre jumble of non-sequitur thoughts.

The biomedicobabble really isn't that different from the psychobabble. The same paternalistic do-goodery applies. The patient's attachment to the label seems to me much the same in both cases.

I'm not up to thinking out the best way/place to post this and interact it all in but I note that on facebook the following came up recently:

Which is from the RCGPs and here it is pasted for those not on fb

GPs with an interest in allergy can now explore the GP with Extended Role (GPwER) in Allergy framework, developed to support safe, high-quality allergy care in primary care. The framework outlines core competencies, scope of practice and governance to help GPs develop or evidence their extended role.
You can also hear more about working as a GPwER in allergy in our podcast, exploring real-world experience, career pathways and the impact on patient care.

GPwER Allergy Framework https://www.bsaci.org/.../gp-with-extended-role-gpwer.../
GPwER Allergy podcast https://elearning.rcgp.org.uk/enrol/index.php?id=1207

I have no idea whether it focuses on eg those with severe peanut allergy or extends out.

But I thought I'd link to it here but note could it perhaps have its own thread 'somewhere else' where between us we might be able to do that work of auditing it to see a bit more about this development

In the back of my mind is that in gastro there is a push for policy or whatever they might call it regarding 'functional'

and I don't know whether allergy stuff might have notes or terms regarding what it does and doesn't see as 'allergy' vs 'functional' and terms like medicalisation and so on.

It would be good to be aware of what is being trained in etc

 

[Jonathan Edwards]

I'm not up to thinking out the best way/place to post this and interact it all in but I note that on facebook the following came up recently:

I have a suspicion that this allergy programme is a tester designed as a model for rolling out all sorts of do-it-yourself programs for GPs to treat things so that the NHS can save money on hospital referrals. It is likely to be all about dumbing down and what is cheap rather than what is based on evidence.

I suspect it is part of the current government's pernicious push for everything being 'community' based - cheap and cheerful.

 

[Mij]

Well MCAS has been taken over by naturopaths here in Canada and now referring to it as a 'comorbidity' to ME/CFS.

MCAS, "unmasking a root cause approach that is widely misunderstood" example

Do we want this?

 

[Mij]

Chronic Fatigue Syndrome (ME/CFS)

MCAS and ME/CFS often overlap. Mast cell mediators can disrupt sleep, lower energy, impair mitochondrial function, and increase inflammatory load. Treating MCAS may reduce post-exertional crashes and brain fog in CFS patients.

 

[Jonathan Edwards]

MCAS and ME/CFS often overlap. Mast cell mediators can disrupt sleep, lower energy, impair mitochondrial function, and increase inflammatory load. Treating MCAS may reduce post-exertional crashes and brain fog in CFS patients.

Where does that come from?

Edit: your previous link is to a chiropractic and massage consortium.

 

[Mij]

It's a clinic in Toronto that most likely opened up business from messages they read on social media?

"NOTE: If you’re dealing with CHRONIC or COMPLEX issues involving multiple systems or body regions (e.g. long-standing pain, neurological, hormonal, or autoimmune concerns), please select Dr. Sina and book the “Complex Case Initial Assessment.”

Dr. Sina Chiropractor has all the answers apparently.

 

[rvallee]

I saw the new thread on diagnostic labels for 'functional' disorders.
This is what concerns me about focusing on disease labels perceived to be 'what the patients like'. You end up with the worst sort of paternalistic manipuation - terms deliberately used to deceive people.

Those are exactly the opposite of one another, though. This is unfortunately where medical training makes you lose the necessary perspective, compared to how we have lived experience of those things. Well, except the CCI thing, that one is not like the others.

 

[rvallee]

Isn't that the same for BPS?
From where I stand the whole thing is a lot more complicated. Each problem is a bit different, for sure, but the principle of trying to minimise iatrogenic harm applies generally.

Not at all. The BPS folks have zero lived experience, they are merely (very) poorly speculating about the subjective experience of others, retroactively attributing things exactly backwards, whereas some of the other terms you don't like stem from that experience being shared by thousands and coming up with loose descriptions of how they impact them, on top of which some biobabble has been stacked because explaining the subjective experience of symptoms medicine doesn't know about is like speaking a dead language to someone with ear plugs.

When you remove the biological attributions, we are left with roughly the same situation as ME/CFS. To many of us there is none of the conflict you struggle with because of your medical training, because we have the lived experience and can relate to others' accounts. This is how I was one of the first people to plainly see that LC was going to be a big thing, and very relevant to ME/CFS, and this is not something that can be taught, because medical training flips it all around to align with The Narrative.

 

[Jonathan Edwards]

Those are exactly the opposite of one another, though. This is unfortunately where medical training makes you lose the necessary perspective, compared to how we have lived experience of those things. Well, except the CCI thing, that one is not like the others.

What is the opposite of what?
Why should my medical training make me lose a perspective - that seems rude to me. I have experienced post EBV and post Covid debility. I have social contacts with long term ME/CFS and I talk to hundreds of people with ME/CFS every day and believe them. Seems an odd accusation.

CCI is different in that it is real and well defined - it just isn't present in the cases operated on by certain surgeons. But the in a sense the problem is the same - if you use these surgeons' measurement criteria you have a hundred-fold diagnostic uncertainty pretty much like MCAS.

 

[Jonathan Edwards]

Not at all. The BPS folks have zero lived experience, they are merely (very) poorly speculating about the subjective experience of others, retroactively attributing things exactly backwards, whereas some of the other terms you don't like stem from that experience being shared by thousands and coming up with loose descriptions of how they impact them, on top of which some biobabble has been stacked because explaining the subjective experience of symptoms medicine doesn't know about is like speaking a dead language to someone with ear plugs.

I don't follow that. The MCAS pundits are doing just the same: "merely (very) poorly speculating about the subjective experience of others, retroactively attributing things ..." They have zero lived experience too.

 

[Jonathan Edwards]

When you remove the biological attributions, we are left with roughly the same situation as ME/CFS.

But that is the whole point. The problem is the invalid biological attribution.

 

[Jonathan Edwards]

This is how I was one of the first people to plainly see that LC was going to be a big thing, and very relevant to ME/CFS

As I did, in 2020, having had the experience. Sorry, but you are making un-called for assumptions.