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

[Jonathan Edwards]

Posts have been copied or moved from this thread:
Mast Cell Activation Syndrome (MCAS) - discussion thread

I am getting ever more angry about just how much of a mess the ME/CFS world is and how much that is contributed to by people who see themselves as advocates but are constantly bringing up make-believe memes from fringe physicians that ensure that nobody with ME/CFS gets treated seriously anywhere useful. I seem to be the only physician in the UK who sees the problem and wants to do something about it. Having spent another month trying to get over yet another Covid* bout myself I admit to being fairly grumpy.

*Which of course was also the fault of physicain colleagues playing with viruses, not to mention the concept of 'multidisciplinary teams' and the list goes on...

 

[Sasha]

I am getting ever more angry about just how much of a mess the ME/CFS world is and how much that is contributed to by people who see themselves as advocates but are constantly bringing up make-believe memes from fringe physicians that ensure that nobody with ME/CFS gets treated seriously anywhere useful.

S4ME doesn't have a big enough megaphone. The charities need to be persuaded of this and to be pushing this line.

I seem to be the only physician in the UK who sees the problem and wants to do something about it.

Thank you for your service.

Having spent another month trying to get over yet another Covid* bout myself I admit to being fairly grumpy.

Hope you get better soon. Can't believe that so little effort has gone into mitigation of Covid.

 

[Jonathan Edwards]

I don't think many patients are super dependent on a certain pathophysiology (besides a general urge of "see my illness is biological" which is caused by the prevalence of BPS ideology and thus is understandable to want to be believed).

It would be nice to know more but a temporary imperfect word to talk about it would also be nice (just like ME was imperfect), perhaps something like MCAS/CIS (Chronic Intolerance Syndrome)

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.

 

[V.R.T.]

Reacting to histamine in food is not the same as mast cells producing histamine.

I never said it was.

I agree there are big problems with the MCAS label. I believe Afrin even claims it causes autism. But there are a huge amount of pwME and LC with new onset allergy type symptoms triggered by a range of things. And many of them manage this with antihistamines. Some of them it is mild and some are very debilitated by this.

I think it's like the POTS/OI debate. It would be a mistake to ignore this completely because of issues with the MCAS label etc.

And people with ME/CFS are deliberately being excluded from a physician led service because they keep insisting they have these pseudo-diseases.

I also just want to ask, would your collegues refuse to treat all people with cancer because some of them believe it can be treated with a raw food diet? I really think this is a poor excuse for prejudicial treatment.

You are right that it isn't helping matters at all but it is not the main reason for us being treated this way. BPS ideas of illness and a cruel medical culture labelling people with syptoms we dont understand hypocondriacs who are undeserving of care is the root cause.

 

[Utsikt]

You are right that it isn't helping matters at all but it is not the main reason for us being treated this way.

Not that the BPS people are treating us this way, but it might be a key reason for why non-BPS people don’t want to touch us. They might be happy thinking ME/CFS is real, but can’t be bothered with all of the other stuff.

Of course that’s their fault for abandoning their duties, but from a strategic standpoint it might still be warranted to ask ourselves and others to stop making the climb even steeper.

 

[V.R.T.]

They might be happy thinking ME/CFS is real, but can’t be bothered with all of the other stuff.

Well why don't they just do exactly that? Deal with ME/CFS and not the other stuff? Plenty of people with other serious chronic illnesses have woo beliefs. They aren't denied basic care and treatment and research.

 

[Utsikt]

Well why don't they just do exactly that? Deal with ME/CFS and not the other stuff? Plenty of people with other serious chronic illnesses have woo beliefs. They aren't denied basic care and treatment and research.

I don’t know. But I do think plenty of people get worse care if they give the doctors a lot of hassle. Maybe ME/CFS are in a particularly bad spot because there are no treatments, so all they are left with are the bogus diagnoses, but they can’t do anything for those either.

 

[Jonathan Edwards]

I also just want to ask, would your collegues refuse to treat all people with cancer because some of them believe it can be treated with a raw food diet? I really think this is a poor excuse for prejudicial treatment.

Of course it is an entirely illegitimate excuse but it is what we are up against!! That is the point.

You are right that it isn't helping matters at all but it is not the main reason for us being treated this way. BPS ideas of illness and a cruel medical culture labelling people with syptoms we dont understand hypocondriacs who are undeserving of care is the root cause.

That is not my experience. People with ME/CFS were explicitly banned from UCLH rheumatology on the grounds that they constantly claimed to have hEDS or somesuch and wanted to be treated on that basis. The shift from fifteen years ago when Finlay and Bansal were still seeing patients to today has been heavily influenced by doctors being fed up with patients bringing pseudoscience.

And I don't think the BPS people really made much difference. I think they were opportunists, symptomatic of a lazy attitude across medicine that was happy to believe the popular prejudice that ME/CFS was just hypochondria. In my department nobody had heard of the BPS people much. They had never heard of the PACE trial. The hypochondriac story goes back muc further. I remember it well in the 1980s and even then it was fuelled by people claiming to have 'myalgic encephalomyelitis' when that had turned out to be a non-disease.

 

[V.R.T.]

People with ME/CFS were explicitly banned from UCLH rheumatology on the grounds that they constantly claimed to have hEDS or somesuch and wanted to be treated on that basis.

I still think this is outrageous.

symptomatic of a lazy attitude across medicine that was happy to believe the popular prejudice that ME/CFS was just hypochondria. In my department nobody had heard of the BPS people much. They had never heard of the PACE trial. The hypochondriac story goes back muc further.

That was the point I was trying to make. Psychobehavioural views stemming from Victorian era conceptions of hysteria etc would have been better.

 

[Jonathan Edwards]

Well why don't they just do exactly that? Deal with ME/CFS and not the other stuff? Plenty of people with other serious chronic illnesses have woo beliefs.

But not to the same degree. They do not come claiming to have four diseases. They do not describe all their symptoms in terms of memes they have picked up from private physicians or social media.

I had some first hand experience of this briefly around 2000 when the 'hypermobility clinic' closed down. I had been asked to take it over because I had been involved in starting up the orginal clinic at another hospital 20 years earlier. I refused because I did not consider hypermobility needed a special clinic. The claimed link with widespread pain and fatigue is pretty baseless.

The clinic got given to someone else but for a while the referrals were sent to all consultants, and maybe me particularly because of my past association. I had a string of patients all of whom knew exactly what their diagnosis was because a physio had told them and it was in line with the view of the great expert at UCl (who I had to tell them was not me). When I tried to explain that I didn't think the analysis held water some got very indignant. Everything was couched in terms of the belief in a process for which we had no evidence. People with cancer and woo ideas may sometimes be like that but they are very much a minority.

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.

 

[Clio]

The problem is that that very desire to have the illness seen as biological plays right into the hands of the BPS crowd. [...]

This is an amazing response and I especially want to highlight the point about how often people claim to have the same number of syndromes together, it is possible we're just dealing with ME/CFS all along.

It's a shame that only PEM is the extremely specific symptom so we can only define a syndrome including it without getting into non-specific "pain and fatigue and vague intolerances" camps.

Still, I would have liked there to be a trial looking at cromolyn sodium for food intolerance in this population, AFAIK there hasn't been one.

 

[Sasha]

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.

I share the outrage that doctors are failing to care for me and other PwME because they don't like the theories that some other patients hold about their ilness - especially when those patients have been told those theories by other doctors.

But if the beliefs of a substantial fraction of the patient community are a big part of the problem, how do we tackle that? Our Fact Sheet 3 was deliberately aimed at health professionals. Is there something we could produce aimed at PwME about this?

What you're saying on this thread (and similar things that you've said on other threads) will be a real eye-opener for most PwME - it's a medical insider's view that we can't normally see. How can we get this across?

 

[EndME]

What you're saying on this thread (and similar things that you've said on other threads) will be a real eye-opener for most PwME - it's a medical insider's view that we can't normally see. How can we get this across?

I doubt they are an eye opener for the most PwME.

JE is seen as old dismissive physician that can't come to terms with the "new reality" and that is spreading fights amongst groups that should be fighting together and other physicians are championed. His statements are disregarded by those those where "substantial beliefs are a big part of the problem". I doubt that the factsheet is being greatly appreciated 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.

For these things to be heard I think you either need other researchers that are respected joining in with JE, you need changes at the advocacy groups or you need a discussion between the opposing sides where everybody can see the arguments laid open (which I doubt will ever happen) or maybe you need something else entirely.

 

[Jonathan Edwards]

For these things to be heard I think you either need other researchers that are respected joining in with JE, you need changes at the advocacy groups or you need a discussion between the opposing sides where everybody can see the arguments laid open (which I doubt will ever happen).

Researchers tend not to come into contact with the medical politics so are rather outside this debate. Discussions have occurred and will continue to occur - not so much between opposing sides as amongst advocates with a wide range of approaches. 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. The current UK government plan for ME/CFS seems to have been negotiated by people with no real understanding of the medical politics so there will be BACME rehab sessions but no provision for people dying of starvation. Apparently that is better than nothing.

Maybe someone should tell the naysayers that the 'new reality' is 8 DNA segments and that I have already got some researchers at a highly prestigious lab unit to set up a project on one of them.

 

[Jonathan Edwards]

The mistake I am most likely to make is not to keep my mouth shut when opening it might embarrass people. But I take seriously the phrase 'nothing about us without us'. The patient community is entitled to know what is going on 'on their behalf'.

 

[Sasha]

I doubt they are an eye opener for the most PwME.

I have been very surprised to hear that NHS doctors are opting out on a wide scale of dealing with PwME because so many PwME hold to these theories, and I've been around a long time. I thought they just didn't want us because they thought it was all in our heads. That's why I think it would be an eye opener for most.

 

[Sasha]

The mistake I am most likely to make is not to keep my mouth shut when opening it might embarrass people. But I take seriously the phrase 'nothing about us without us'. The patient community is entitled to know what is going on 'on their behalf'.

I'm a big fan of not keeping your mouth shut. Especially when nobody else is.

 

[Clio]

Seeing how "well" received the fact sheet was at the /r/cfs subreddit I think it may be worthwhile to do one debunking the common beliefs like mitochondria dysfunction neuroinflammation biobabble. Picking a few commonly shared studies and demonstrating what's wrong with their methodology in one place sounds like a good idea. Currently all of these debunks are spread across hundreds of threads and too much to take in at once.

 

[Trish]

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

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 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.

 

[Jonathan Edwards]

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

I tend to studiously avoid any comparisons with the colonies, in case the mods think I am being disparaging. However, you have neatly managed to make the disparagement even out. Probably on the mark.