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

[Sean]

The rest of them invariably treated me like a head case. (It wouldn’t excuse their behavior if I did, but I don’t even have a history of mental illness.)

Not that having such a history should make any difference. Mental illness does not confer immunity to physical illness.

 

[Jonathan Edwards]

Would this very brief summary of your thoughts, @Jonathan Edwards, be accurate and maybe clear up some confusion?

I am not sure. I don't want to appear to be telling anyone what to do. I am just trying to point out that there may be unexpected consequences of our actions and that we should all take responsibility for those actions.

 

[Amw66]

Not that having such a history should make any difference. Mental illness does not confer immunity to physical illness.

But the label can make you less " believable" if you present with one .

 

[Sean]

But the label can make you less " believable" if you present with one .

Agree completely. It shouldn't, but it does.

 

[lelelemonade]

And there was no suggestion that anyone did not deserve medical care. That sort of inference seems to me uncalled for.

Right, you want them to get medical care but you don’t want them to do advocacy, use the terms that make their illness legible to others, oppose the creation of specialized centers that would cater to their needs, marginalize the “fringe physicians” who treat them…

 

[lelelemonade]

I disagree. This is an issue that affects young women because ME/CFS is common in young women. Young women are normally more hypermobile than men or older women. The labelling as 'hEDS' was done by physicians who took these people seriously. It then became a problem for other physicians who could see how unfounded the label was. I cannot actually see what you are arguing there.

The physicians involved spend the vast majority of their time looking after women and taking them seriously - whether with rheumatoid, lupus or other joint pain in the elderly - all rheumatology clinics have a heavy female weighting. The idea that they 'dimiss women's suffering' is ridiculous. Why am I, as a physician from that department, here at all? The idea on this forum is to have some evidence for claims and I don't see any evidence here, just political dogma, to be honest.

I will go on doing my best to advocate for ME/CFS as something that should be treated as a real disease. I appreciate that some people are sensitive about any critique of the advocate community but nobody is perfect and I personally think that the adage 'first do no harm' applies to all of us, not just doctors.

Looks like I said something that contradicted your own political dogma. Do we really need to debate the fact that misogyny exists and affects the decisions clinicians make, in this day and age?

You know very well that the situation of people whose illnesses have visible and measurable signs is completely different. You can’t refuse to treat someone with signs of RA. You can however immediately decide that a young woman with ME/CFS has “Munchhausen’s by internet” because she told you she has one of those “meme diagnoses” (which include ME/CFS as far as most clinicians are concerned). The fact that women are considered unreliable narrators of their own experience and the tendency to dismiss their symptoms as participation in a trend, attention seeking, the consequence of being too emotional and impressionable, has something to do with misogyny, yeah. Or do you think that the psychiatrists who rebranded ME as mass hysteria were operating in a manner that was entirely ideologically neutral and not influenced by any bias they had towards women?

So you don’t hold the patient community responsible for the harm being done by negligent clinicians, you have simply said that the actions of the patient community have led to or contributed to ME/CFS patients being harmed by those clinicians and therefore the patient community should change its conduct. Which is functionally identical to holding someone responsible for something.

You can spread awareness about the risks of having certain diagnoses in your chart, though I doubt that someone who’d let an ME patient starve to death would act any different if the patient’s diagnosis was just ME/CFS as opposed to ME/CFS, MCAS and POTS. There are also valid criticisms to be made about the ways NGOs and certain high profile ME/CFS advocates (Bateman Horne, etc.) do science communication. But you’re invoking the moral responsibility to do no harm and extending it to third parties, who are largely laypeople saying things on the internet. In my opinion, that minimizes the responsibility those clinicians and institutions who enable them bear for their actions, and unfairly morally implicates people who are simply trying to get treatment and recognition.

I sincerely hope that my fellow patient community members can see that this kind of rhetoric is unhelpful and divisive, and that we should be in full solidarity with fellow patients, including those who use labels some of us don’t like. We need to correctly identify the issues that we’re facing, which go way beyond bad science and advocacy.

 

[Hutan]

The patient community needs to dig itself out of this hole if we are to get any clinical service.

I’m not saying you’re responsible for their behavior but if this is the kind of action this framing of the problem inspires we should question whether it’s productive to hold the patient community responsible for medical negligence, because in my opinion it would only lead to pointless infighting.

I interpret that first sentence as meaning that it is up to us to change things, because there is little sign that the medical community as a whole is going to recognise the problem and fix it on their own.

In fact, when we look at the actions of the UK Royal College of Physicians, BACME, the Lightning Process-endorsing RNZ College of GPs, Gerald Coakley, Matthew Phillips, Suzanne O'Sullivan, and also those who promote biological etiologies and treatments that have no evidence..., it's clear that many clinicians are actively working to make things worse for us. They do this for many reasons - to not feel inadequate when faced with an illness they can't diagnose or treat, to feel superior to someone, to save time and effort in a overworked system, to just do what they have been taught, to get fame and fortune ...

There's a big difference between saying patients are responsible for the harm the medical profession as a whole has done, and saying that patients and their supporters are the ones that have to drive the stopping of the harm.

But you’re invoking the moral responsibility to do no harm and extending it to third parties, who are largely laypeople saying things on the internet. In my opinion, that minimizes the responsibility those clinicians and institutions who enable them bear for their actions, and unfairly morally implicates people who are simply trying to get treatment and recognition.

I don't think anyone is minimising the responsibility of the clinicians and institutions for the harm they cause. Many of the discussions here try to make the harm caused very clear so that the responsibility cannot be minimised.

But, history has shown us that if we wait for those who cause the harm to fix things, we will be waiting a long time.

One of the things we can do is carefully examine the labels we have been given for our illnesses, carefully examine the stories we have been given about the causes and the treatments, and try to move forward only with what seems to be true.

 

[Jonathan Edwards]

Right, you want them to get medical care but you don’t want them to do advocacy, use the terms that make their illness legible to others, oppose the creation of specialized centers that would cater to their needs, marginalize the “fringe physicians” who treat them…

I am very keen for people with ME/CFS and their carers to be involved in advocacy but not advocacy that promotes pseudoscience. Terms like MCAS, POTS and hEDS do not make illness legible to others. Nobody knows what they mean. The main effect of these terms is to promote ridicule amonsgt the general population who have a pretty good idea that they don't mean much.

Note that this is in complete contrast to ME/CFS, which does have a useful meaning.

Th specialised centres set up to deal with MCAS and hEDS are, as far as I have seen, pseudoscience outfits that may cater for the 'need' to have a list od diagnoses (I would have thought one would do) but there is no evidence for them catering for any medical needs that I can see. Maybe they provide drugs that might help but we have no way of knowing because they never do proper trials.

 

[Jonathan Edwards]

In my opinion, that minimizes the responsibility those clinicians and institutions who enable them bear for their actions, and unfairly morally implicates people who are simply trying to get treatment and recognition.

Then you have completely misunderstood my position.

 

[Utsikt]

I interpret that first sentence as meaning that it is up to us to change things, because there is little sign that the medical community as a whole is going to recognise the problem and fix it on their own.

I take it to mean that if the advocates of the patient community continue to ask for the wrong things, we are guaranteed to get the wrong things. If we ask for the right things, there is at least a chance that some sane people in power listen and give us the help that is needed to turn things around.

Some might take the position that we can’t influence things anyways so there is no reason to try to get the advocates to quit the pseudoscience, but that’s a different discussion.

 

[DHagen]

Terms like MCAS, POTS and hEDS do not make illness legible to others. Nobody knows what they mean. The main effect of these terms is to promote ridicule amonsgt the general population who have a pretty good idea that they don't mean much.

Note that this is in complete contrast to ME/CFS, which does have a useful meaning.

I think "general population" needs to be defined here. Certainly, in my experience, the "general population" is both more familiar with and more sympathetic to these conditions than ME/CFS. Even among medical professionals, a significant enough proportion seems to use employ these terms - particularly POTS - regularly that I would not be comfortable stating that even the "general population of physicians" ridicules these terms and those diagnosed with them. There is certainly a percentage that do, but that percentage is often the same that would refer pwME to CBT or something equally ineffectual and dismissive. Perhaps none of this is as it should be, but it is what I have observed.

 

[Hutan]

Th specialised centres set up to deal with MCAS and hEDS are, as far as I have seen, pseudoscience outfits that may cater for the 'need' to have a list od diagnoses (I would have thought one would do) but there is no evidence for them catering for any medical needs that I can see. Maybe they provide drugs that might help but we have no way of knowing because they never do proper trials.

I don't think many people have a need for a list of diagnoses. What people are seeking and needing is an explanation for their symptoms and the respect and the hope for a successful treatment that comes from that. That's what the pseudoscience outfits are catering for, when it comes to the patients.

The collection of diagnoses tends to be an outcome of a diagnostic and treatment seeking odyssey, a result of promoted treatments not alleviating the suffering.

Sure, some people may think that having a long list of diagnoses somehow makes them more worthy of care and sympathy. And some people may want to avoid an encompassing diagnosis like ME/CFS because they think it isn't respected as a biological disease. In contrast, hEDS or MCAS can easily sound believable, with the biological words and the confusion with real conditions, especially when the diagnosis is delivered by a doctor in a clinic, who has videos on you tube and is endorsed by a patient charity and influencers.

As @rvallee would say, a big part of the problem is that pseudoscience and real medicine are extremely hard to distinguish. Perhaps it has always been so.

 

[Jonathan Edwards]

I think "general population" needs to be defined here.

Fair enough. I suspect the situation is much more complicated. There will also be differences between countries and culture. And when I contrasted with ME/CFS I was intending to relate that to the meaningfulness more than the ridicule bit, so that probably misfired.

 

[Jonathan Edwards]

I don't think many people have a need for a list of diagnoses

Right. But there are physicians who sell these lists. And yes they provide (false) hope of an explanation and treatment.

The collection of diagnoses tends to be an outcome of a diagnostic and treatment seeking odyssey,

Not so sure about that. I know of a number of physicians who are very happy to sell full lists at one sitting.

And some people may want to avoid an encompassing diagnosis like ME/CFS because they think it isn't respected as a biological disease. In contrast, hEDS or MCAS can easily sound believable,

I can see that, but if we want people with chronic disabling symptoms to be taken seriously surely that needs turning around? The longer there is a believers' bubble that has no relation to reality the longer it will take to make progress.

As @rvallee would say, a big part of the problem is that pseudoscience and real medicine are extremely hard to distinguish. Perhaps it has always been so.

They may always have been hard to distinguish for the lay person but I find it quite hard to believe that my immediate sense that a phoney has just taken the lectern is entirely based on a trained ear. When I have seen either the usual BPS suspects or the bendy people take to the stage my bullshittometer usually flicks into the red pretty quickly.

And the problem has changed a lot in the last twenty years because the garbage is no longer filtered out either by the journals or by 'learned' societies, both of which see making a quick buck as much more important than truth in a way that didn't apply in 1980.

 

[Hutan]

They may always have been hard to distinguish for the lay person but I find it quite hard to believe that my immediate sense that a phoney has just taken the lectern is entirely based on a trained ear.

One of the biggest problems we have is not with the inability of the lay person to identify the pseudoscience. (And frankly, I agree that it's usually pretty easy to make a good guess about what is and isn't pseudoscience, for a bullshitometer to turn red, although being completely certain is a lot harder.)

It's with the seeming inability of medical professionals to identify the practice of it in their colleagues, or at least to be bothered to do something about it.

I wrote about the need for our community to be active in making things better, and I whole-heartedly believe and live that. But, having just made that thread on Dr Phillips and the platform he has been given to expound all sorts of nonsense in the influential Goodfellow Unit that provides training materials for GPs, or that fact that the Goodfellow Unit is run by a proponent of neurolinguistic programming and promoter of LP who is highly esteemed in the medical profession and seems to be untouchable. Or thinking about Mel Abbott and her LP-clone product and the fact that she has been given a platform at multiple GP conferences, let alone that she has been repeatedly voted 'best speaker' multiple times...

Why are doctors on the whole so bad at this stuff? Why don't they see the nonsense and call out their colleagues for it? It's not just that they think we are mad people and if the Lightning Process keeps us out of their offices, then great. Dr Phillips was equally divorced from reality with his trial of a ketogenic diet for people with dementia, and he's a director of neurology at a significant hospital. Doctors have to have a certain level of intelligence to get through the exams, they are supposed to have a certain level of training that should help them distinguish rubbish. Do they not see the problems, or do they not care?

Why are doctors allowed by their governing organisations and their colleagues to go on promoting the bullshit, not just allowed but actually facilitated to do that, and is there anything we can realistically do about that?

 

[Utsikt]

Why are doctors on the whole so bad at this stuff?

Partially because even basic scientific concepts are not includes in their training. Just looks through the publicly available subjects for medical degrees at universities.

Why don't they see the nonsense and call out their colleagues for it?

For the same reasons that any other profession don’t call out each other, take your pick: loyalty to their peers, incompetence, informal power structures, no incentives, fear of retaliation, having to face their own failings, complacency, cowardice, indifference etc.

 

[DHagen]

They may always have been hard to distinguish for the lay person but I find it quite hard to believe that my immediate sense that a phoney has just taken the lectern is entirely based on a trained ear.

One of the biggest problems we have is not with the inability of the lay person to identify the pseudoscience. (And frankly, I agree that it's usually pretty easy to make a good guess about what is and isn't pseudoscience, for a bullshitometer to turn red, although being completely certain is a lot harder.)

You seriously believe that a lay person (particularly one newly diagnosed, frightened, and confused) should be able to read through the guides published by institutions like the Mayo Clinic, Cleveland Clinic, and Stanford University (as well as specialized clinics like Bateman Horne) and immediately recognize that the condition they are describing is "bullshit"? The average person with no statistical or medical background is meant to be able to recognize that hundreds of peer reviewed papers in the most frequently cited medical journals the world over are poorly constructed? I am not saying that any of these institutions are correct, about anything, but you think much more highly of the abilities and intelligence of the average human than I do if you think that they can parse this shit at a glance. I guess I am even more stupid than I have long suspected.

If we're going off instinct, vibes, and what sounds ridiculous, why should we believe in ME/CFS at all? It defines my entire existence and yet I still think any description of it sounds a hell of a lot more nonsensical and less believable than something like POTS.

When I have seen either the usual BPS suspects or the bendy people take to the stage my bullshittometer usually flicks into the red pretty quickly.

Excuse me? We're now mocking people diagnosed with hEDS as "bendy people?"

Every time I think I am ready to step away, to stop feeling insulted, and to resist opening my stupid mouth, there's another statement like this and another few hours of tachycardia to deal with. I try to tell myself it is important to keep coming back and to be humble and to try to learn despite my limited capacities, but this shit just kills me.

 

[Sean]

Why are doctors on the whole so bad at this stuff? Why don't they see the nonsense and call out their colleagues for it?

Because doctors are not scientists. They are high level technicians, which is a very different skill set and mindset.

Doctors have to apply existing knowledge. Scientists have to generate the knowledge for the first time.

Which means that doctors are not so good at determining and judging the veracity of the knowledge and how it was generated in the first place.

Plus other factors, like the hierarchical nature of medicine in which it is taboo to question your seniors, a professional culture that harshly punishes admitting ignorance, etc.

 

[Amw66]

One of the biggest problems we have is not with the inability of the lay person to identify the pseudoscience. (And frankly, I agree that it's usually pretty easy to make a good guess about what is and isn't pseudoscience, for a bullshitometer to turn red, although being completely certain is a lot harder.)

It's with the seeming inability of medical professionals to identify the practice of it in their colleagues, or at least to be bothered to do something about it.

I wrote about the need for our community to be active in making things better, and I whole-heartedly believe and live that. But, having just made that thread on Dr Phillips and the platform he has been given to expound all sorts of nonsense in the influential Goodfellow Unit that provides training materials for GPs, or that fact that the Goodfellow Unit is run by a proponent of neurolinguistic programming and promoter of LP who is highly esteemed in the medical profession and seems to be untouchable. Or thinking about Mel Abbott and her LP-clone product and the fact that she has been given a platform at multiple GP conferences, let alone that she has been repeatedly voted 'best speaker' multiple times...

Why are doctors on the whole so bad at this stuff? Why don't they see the nonsense and call out their colleagues for it? It's not just that they think we are mad people and if the Lightning Process keeps us out of their offices, then great. Dr Phillips was equally divorced from reality with his trial of a ketogenic diet for people with dementia, and he's a director of neurology at a significant hospital. Doctors have to have a certain level of intelligence to get through the exams, they are supposed to have a certain level of training that should help them distinguish rubbish. Do they not see the problems, or do they not care?

Why are doctors allowed by their governing organisations and their colleagues to go on promoting the bullshit, not just allowed but actually facilitated to do that, and is there anything we can realistically do about that?

Ego

 

[Hutan]

Ego

Yes, but surely some can see that the woo makes the whole profession look really bad? If you are concerned about your reputation, wouldn't you care that others are undermining the respect and trust that being a doctor used to qualify people for?

You seriously believe that a lay person (particularly one newly diagnosed, frightened, and confused) should be able to read through the guides published by institutions like the Mayo Clinic, Cleveland Clinic, and Stanford University (as well as specialized clinics like Bateman Horne) and immediately recognize that the condition they are describing is "bullshit"? The average person with no statistical or medical background is meant to be able to recognize that hundreds of peer reviewed papers in the most frequently cited medical journals the world over are poorly constructed?

I'm not sure if you read my paragraph? I don't think our biggest problem is that lay people believe the pseudoscience. And, no, I don't think lay people should have to be experts in their own disease. I guess I was trying to push back against the 'lay person can't identify pseudoscience/medical professional can' dichotomy. The reality seems more complex than that.

While it can be easy to think a treatment sounds unlikely, the inability to be completely sure that something is pseudoscience is diabolical for people who are utterly desperate for some improvement. We often see on the forum that people thought some treatment sounded unlikely, but with their doctor, let alone the Mayo Clinic, promoting the therapy, and the desperation to be well, they gave it a go anyway.