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

[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.

 

[hotblack]

Sorry, but this is not the case. I know because the conversations went on around me

Okay, I don’t doubt what you experienced. I do doubt the value of taking it at face value and extrapolating from that experience to the wider context and motivations of doctors in the present day and using it as an argument for action here.

Let me put it this way, how likely are people responsible for this to admit they have a blindspot, a lack of understanding or worse? It is very common to blame others for our own failure or mistakes.

I don’t see this as telling a hard truth as it has been presented at times but accepting a false and unhelpful premise, perpetuated by those responsible for failure. I’ve said my bit and asked people to think again on one aspect of what we’re trying to do. Because it keeps on coming up and without rethinking it I am sure it will again and it will continue to be unhelpful. I don’t doubt anyone’s motivations here.

 

[Hutan]

For sure, the core problem is not that people come to doctors with incorrect beliefs about their illness. The core problem is that doctors generally, like everyone but probably often especially so, want to feel competent and appreciated.

Illnesses where the pathology is not understood and for which there are no treatments make it harder for doctors to be and to feel useful. If the patient also gets angry and/or disappointed because their pre-existing belief about their illness is not validated, and because the treatment that they hoped to get isn't prescribed, that makes the interaction even less pleasant for the doctor. If you as a doctor are faced with the option of avoiding those patients who make you feel inadequate and a bit angry and instead you can see other patients that you can truly help and who are grateful, of course you will prefer that.

And, to be honest, when there aren't enough specialist doctors to see everyone, I suspect the highest benefit to society as a whole in the short term is for the patients with treatable diseases to be prioritised for medical attention.

Maybe, if we have patient charities who appear professional and sensible, they could be effective in helping doctors understand that:

1. doctors can actually help by providing support, by admitting they don't have much in the way of treatments, and by not promoting unevidenced ideas; they can work with specialist nurses to help provide that support

2. very smart, caring doctors can help a lot by specialising in these patients with poorly understood conditions - they can accurately screen for differential diagnoses, make careful observations and help researchers push the understanding of the disease(s) forward

3. patients who are not able to eat in fact have a treatable condition (i.e. starvation) and so should be seen and treated to enable them to get adequate nutrition

 

[nataliezzz]

I refused because I did not consider hypermobility needed a special clinic. The claimed link with widespread pain and fatigue is pretty baseless.

Not really baseless when you consider the hypermobility - obstructive sleep-disordered breathing connection (people with lax connective tissue have more collapsible upper airways). A meta-analysis found that people with EDS/Marfan syndrome were ~6 times more likely to have obstructive sleep apnea (OSA) than the general population (odds ratio 6.28 [95% confidence interval 3.31–11.93], P < 0.001. Fatigue is a well recognized symptom of OSA syndrome. Arguably, widespread pain is too (a meta-analysis found a 21% prevalence of fibromyalgia in OSA patients, vs. ~2% in the general population)

S4ME Link: Fibromyalgia in obstructive sleep apnea-hypopnea syndrome: a systematic review and meta-analysis, 2024, He et al.

 

[Holinger]

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.



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.

No no, I understand and believe you period. I just find it really sad.

 

[ScoutB]

On top of the patient-blaming concerns, I also think it's likely just impossible to stop advocates publishing stuff about MCAS/hEDS/etc, at least until science advances on this and has something useful to offer. For now, these labels are very important to a lot of people, not to mention totally entrenched on social media.

Like others, I am also skeptical doctors would take us much more seriously even if we could ditch the extra labels. We're already committing a major sin in appearing healthy while claiming illness. Like I think @hotblack is saying, the woo-beliefs seem more likely to give doctors an easy out (because it suggests the patient is being difficult to work with) than to actually be the deciding factor, perhaps on a subconscious level. Not arguing Jonathan's specific case though, people are idiosyncratic, and his situation sounds special, this is just a general statement based on how many of these interactions go as patients.

That all said... Of all the groups involved, doctors and patients seem the two hardest for us to convince directly. Conversely, getting outside people with power involved seems to have had a really positive effect on our position (thinking of DecodeME, and all the other great researchers here on S4ME, journalists like George Monbiot and David Tuller, there was a good SciShow episode as well on ME/CFS and so on). Improving the broader cultural view, and even the scientific view, on ME/CFS honestly seems more tractable than convincing doctors and patients, because journalists and scientists have less of a personal stake in the fight. And then when the culture and science shifts, patients and doctors come along for the ride.

On that note, @Jonathan Edwards, I think you mentioned earlier in the thread that scientists were easier to bring over than doctors. How can we recruit more scientists?

 

[V.R.T.]

I have an electronic copy of the documents that show quite specifically why clinical and laboratory work at UCL on ME/CFS was asked to be closed down. They are shocking.

The S4ME Committee should have a copy of this document, in my opinion. It is vitally important to the history of ME/CFS

I personally don't see any way forward for me as an advocate unless some of this is addressed. If I talk to BPS colleagues they can simply laugh in my face, as they have done so far. It isn't the whole problem - not at all - but it is a key obstacle to my making any headway.

My concern is I don't think it is realistic to expect this kind of seismic change in how patients see their illness and diagnosis without a big breakthrough in research. It's not something we on the forum can reasonably effect. If we have to do that to get doctors involved then we are back to the same research breakthrough needed catch-22.

Perhaps getting the charities to change messaging is possible.

Surely there has to be an approach to clinicians that acknowledges the biobabble issues but does not let it become a conversation ender.

I think this whole affair highlights just how cruel medical culture can be.

I entirely agree that this is criminal negligence but do you seriously think that hiring a lawyer to press charges would be good tactics?

Can you explain why legal action wouldn't be effective? As you say, there is clear evidence of criminal negligence. Surely there being consequences for this sort of action might make others think twice about discrimination?

We might not be worthy patients to your collegues but we are all still supposedly people under the law with the same human rights as anyone else.

I am very tired of being told to just take awful systemic abuse with a smile before holding out my bowl and saying 'please sir may I have some care?'

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)

This lays bare the crux of the matter to me. This idea of our bad behaviour, and the biobabble, is an excuse. Nothing more. If we put all our efforts into stemming biobabble coming from patients, even if we were successful the doctors would quickly find another excuse. Perhaps we are ungrateful. Perhaps we are too bitter and resentful over the history of ME. Perhaps we are drug seekers. Perhaps we are potentially violent. Etc.

You cannot reason with the excuses people make for abusing you. I have personal, bitter experience of this fact. You can change yourself until you dont recognise yourself anymore and it will never be enough.

 

[Sasha]

his 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.

I hope so, because I'm finding it hard to believe that any consultant is finding that 100% of their ME/CFS patients are so difficult to deal with as to justify, in the consultants' heads, throwing all PwME under the bus.

 

[V.R.T.]

The problem is I have explicitly started interactions with medics by explaining I understand it’s hard for them, that they would like to help me, that there are no treatments, etc etc.

And still get treated, to be blunt, like shit.

Precicely. I tried to hard not to be one of 'those' patients, did basically no research past the NHS 'chronic fatigue syndrome' page when I was undiagnosed and mild, never claimed to have 4 different diagnoses or stated anything with confidence except that I felt unwell all the time. And I was still treated terribly and gaslit into worsening my condition.

Now all it takes is for me to state the fact that I am housebound and need home visits before tensions start to rise with doctors.

The sin we are committing is existing with ME/CFS. Biobabble may muddy the waters with charities but to these doctors it is an excuse, a way of making their unforgivable behaviour more pardonable to each other. We have become the pariahs, the scapegoats for medicine. We serve a cultural function as the Other, the undeserving, those who it is ok to shun or unload all your resentments of patients on to.

Doctors with ME/CFS report being shunned and discriminated against just the same as all pwME. All their expertise melts away. This is another glowing sign that this stigma is not rational and cannot be reasoned with by acting correctly as a patient.


Doctors who do realise ME/CFS is real seem genuinely horrified at the situation, but immediately take a reputational hit. So we at least know that if we get through to them that they are wrong, the half decent ones will be horrified. We need to find some doctors in decent standing who are smart enough to see through the stigma and prepared to take a temporary reputational hit for the huge reputational boon that will come from being the first ones to enter ME/CFS care and research - the ones who did it before the big breakthrough, and perhaps laid the foundations for said breakthrough.

 

[Sasha]

For sure, the core problem is not that people come to doctors with incorrect beliefs about their illness. The core problem is that doctors generally, like everyone but probably often especially so, want to feel competent and appreciated.

Illnesses where the pathology is not understood and for which there are no treatments make it harder for doctors to be and to feel useful. If the patient also gets angry and/or disappointed because their pre-existing belief about their illness is not validated, and because the treatment that they hoped to get isn't prescribed, that makes the interaction even less pleasant for the doctor. If you as a doctor are faced with the option of avoiding those patients who make you feel inadequate and a bit angry and instead you can see other patients that you can truly help and who are grateful, of course you will prefer that.

I'd been wondering whether this could be mitigated by setting realistic expectations for what a consultant can offer (maybe via the appointment letter, and along the lines of @Jonathan Edwards's guidelines in the factsheet for professionals), and then I had a look at what's on the NHS website about ME/CFS treatment and it's lots of BPS-oriented stuff about changing behaviour. I don't know what scope there would be for a consultant to write their own patient info sheet about what they can offer and what to expect.

That assumes that they'd be motivated to do that in the first place, though.

Where are the rheumatology consultants with family members with ME/CFS? You'd think that they at least would be trying to do something but maybe any efforts are being buried under the disapproval of their colleagues.

 

[Sean]

However, I think that if we come at patients as hard as JE has been coming at the issue in these threads, it will be percieved as an attack, rightly or wrongly.

I am not unsympathetic to patients struggling when confronted with the appalling reality of their situation, including inappropriate diagnoses and explanations and treatments.

But believing in and acting on unproven diagnoses and claims about the underlying causal process, and how to treat it, is a losing game.

 

[V.R.T.]

But believing in and acting on unproven diagnoses and claims about the underlying causal process, and how to treat it, is a losing game.

How are patients supposed to know the diagnostic criteria issues with POTS MCAS etc when charities and advocates and friendly doctors all talk about them with the same legitimacy as MECFS?

 

[Evergreen]

There's a BBC article today that is relevant to this discussion. It has also been mentioned on this thread.

In short, there's a group of patients in Canada who were diagnosed with a mystery neurological illness by a doctor called Marrero, who suspected an environmental cause. Authorities now believe there's no mystery illness. Some patients have been diagnosed with other conditions. Some hold fast to the mystery diagnosis and Marrero.

From what is said in the article, it seems like that sticking with Marrero's diagnosis is likely to undermine patients' credibility with other physicians.

And in my view, for the most part, when we go in to see a doctor with our diagnosis of ME/CFS, without any additional labels, we are viewed similarly.

Over the coming months, Marrero and the CJDSS scientists began to suspect that instead of a small cluster of CJD patients, the province of New Brunswick might have on its hands a much larger cluster of people suffering from a completely unknown brain disease.
...
Instead, last year, a bombshell research paper authored by several Canadian neurologists and neuroscientists concluded that there was in fact no mystery disease, and that the patients had all likely suffered from previously known neurological, medical, or psychiatric conditions. The New Brunswick cluster was, one of the paper's authors told the BBC, a "house of cards".

hundreds of the patients disagree. Defiant, fiercely loyal to Marrero, and backed by passionate patient advocates, they argue that the paper is flawed and reject any notion that the cluster might not be real.

Marrero, though, was attentive and caring. He took her symptoms seriously. "He made me feel seen and that what I was experiencing was important," Lucas wrote in a Facebook post about her struggle.

It was a sentiment that seemed to be shared by everyone who saw Marrero. He held their hands during appointments. He remembered them, cried with them. He was "the only one listening to them,"

Dr Gerard Jansen, a neuropathologist who was attached to the CJD Surveillance System, had noticed something unusual when referrals from Marrero's office started piling up. Jansen recalled feeling "flabbergasted" at Marrero's notes, which he said featured an array of broad and unrelated clinical observations — a "diarrhea of symptoms".

Jansen saw clues in the patients' files that he said pointed to already defined neurological diseases. When he examined brain tissue samples of a few cluster patients who had died, he found signs of Alzheimer's disease and Lewy body dementia.

He was alarmed... Keen to get his concerns down in writing, he sent Coulthart a long and detailed email.

"All available evidence and logic" pointed to a collection of different diseases, Jansen wrote.

"The patients are real, but the clustering as a mystery disease is not."

Jansen, the neuropathologist who had raised concerns, had by that point examined the autopsies of eight cluster patients and firmly believed they all had known, diagnosable illnesses. Troubled, he passed his conclusions on to the oversight committee and presented them to the Canadian Association of Neuropathologists.

Based on what is written about her symptoms in this article, this patient, who was diagnosed with FND but sticks with Marrero's diagnosis of the mystery illness, could easily be labelled with ME/CFS:

Cormier has featured heavily in the media coverage of the cluster, becoming a kind of poster child for the mystery disease. She was first referred to Marrero at just 18. A high school student, dancer and competitive figure skater, she had begun to experience fatigue-like symptoms and muscle soreness and then passed out at school.

A few weeks later, Lang [who diagnosed her with FND] called Cormier to inform her that a delayed test result had shown some reduced blood flow in her brain — something Marrero had also observed — and which can be caused by various medical or psychological issues including depression. Lang told Cormier the abnormality was slight and bore no relation to her symptoms, so she shouldn't worry about it.

 

[Jonathan Edwards]

Okay, I don’t doubt what you experienced. I do doubt the value of taking it at face value and extrapolating

I think you have misunderstood my purpose here. I am not intending any extrapolation or generalisation. I am talking about a practical reality that I think advocates could address.

But there are also complexities to the reality of doctor-patient interactions that I think you may just not be aware of - what Nightsong referred to elliptically as my elliptical referral to ...
There is more to say but maybe another time.

 

[rvallee]

To me, it sounds like the way forward should be to press criminal charges or, at the very least, to revoke licenses and terminate positions.
These people clearly hate us and either do not care if we suffer and die or believe we actively deserve it.

We don't have any standing for this, it won't work until a shift occurs, but it will be important to go out and find all of those documents for the massive class action lawsuits that will be necessary to redress this and stop it from continuing. Until then we are completely stuck in a bind because the opinion of the people responsible for this disaster are literally considered legal evidence in a court of law, they can simply testify for themselves as being correct and that's that.

Which is a pretty big loophole when you think about it, but that's just the nature of how health care was built: a completely top-down process where we are passive recipients of expert services without any standing about those services, no matter how badly they fail us and no matter whatever is written down about it.

 

[Jonathan Edwards]

On that note, @Jonathan Edwards, I think you mentioned earlier in the thread that scientists were easier to bring over than doctors. How can we recruit more scientists?

it needs people who understand both the clinical and scientific knowledge base for ME/CFS contacting likely researchers and presenting the case in a plausible way - one to one in person. I am doing my best to go through all the people i know.

 

[Jonathan Edwards]

My concern is I don't think it is realistic to expect this kind of seismic change in how patients see their illness and diagnosis without a big breakthrough in research. It's not something we on the forum can reasonably effect.

I think that is very pessimistic. There are lots of members here who say they have radically changed their view on how to approach the science since coming here. I think the forum has been hugely effective in that way. It wasn't my idea. The idea of a forum like this came from Mark when it he tried to set it up on Phoenix Rising and was chased away by vested interests. And from Simon and Tom and Graham and Bob and everyone else. I play devil's advocate a lot of the time and it is easier for me to take the flack but this is a hugely successful movement. Being pusillanimous about achieving more seems a bad idea.

 

[rvallee]

We all agree that denying care due to the woo can’t be blamed on the patients. But I think we can also acknowledge that limiting the woo would be beneficial for everyone - and the patients and advocates have influence here which they should use responsibly.

All of this is independent of another argument for limiting the woo: it’s not good science or medicine. So regardless of if you agree with my line of reasoning above, the conclusion is the same: anyone involved in ME/CFS should distance themselves from the woo.

There is no plausible way of doing that, though, so the whole issue is moot. It's not possible to reach even a majority, let alone influence them, and it wouldn't change a damn thing anyway, if that excuse went away completely, it would simply be replaced by another, and if that excuse went away too, so would it, and so on and on.

And as an excuse it could actually look plausible if the psychobabble wasn't so completely dominant and unchallenged. A minority of a large population says things that are not backed by evidence, and we get collective punishment for it, all of which is illegal. The health care systems and the institutions of medicine openly promote and implement, to massive harm, blatant pseudoscience. Those things are not remotely the same, they are in fact comically apart from one another.

We know for a fact that none of this makes any difference because of LC. When LC started, those suffering from it were very eager to separate themselves from us and all of this. And they did, and it did them no good, they were just as gaslighted and discriminated against. It makes absolutely zero difference, and it doesn't matter what excuses are offered in secret behind closed doors about it.

If every single thing happened correctly, if we managed to not only reach but convince every single person suffering from ME/CFS to follow this and 'behave correctly' for years, it literally wouldn't change a damn thing. Let's say it happened, and we let it fly for, I don't know, 2-5 years, to wait for all this clearly pent-up resentment at having their expertise challenged to go away, what is the most realistic scenario?

"You know, we don't hear much about those problems anymore. Now that you mention it, I don't think I or any of my colleagues have even seen a single case of this so-called illness, so I guess the fad has finally died down."