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

[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.

 

[Nightsong]

There is a video interview in which Afrin discusses the supposed connection between autism and "MCAS". It's on the "TalkMCAS" site (link), "Video 3", starting at ca. 10:03.

I've also been asked where the screenshots I posted (link) - where Afrin claimed a possible link between "MCAS" and spontaneous human combustion - come from. They come from chapter 29 of Afrin's book, "Never Bet Against Occam" (2016 ed).

 

[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.

 

[Trish]

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?

Is anyone coming down hard on patients for believing what their doctors tell them? I haven't seen that.

I have seen concerns about advocacy organisations that state MCAS, hEDS and POTS are established co-morbidities with ME/CFS without providing evidence.

I have seen concern about doctors telling patients they have conditions without also telling them that the labels are not recognised as established diagnostic categories recognised by all doctors

I have seen concerns that if patients tell other doctors their list of diagnoses, this may lead to false asssumptions being made about what is wrong with them, to their detriment.

And I have seen concerns about doctors prescribing treatments that have not undergone clinical trials to test efficacy for particular symptoms, without warning patients that they are experimental treatments, thus resulting in patients not having the opportunity to give fully informed consent.

I think these concerns are legitimate in a situation in the UK where some very sick people are being denied hospital care because doctors don't believe MCAS and hEDS are real causes of the pwME's symptoms.

 

[V.R.T.]

Is anyone coming down hard on patients for believing what their doctors tell them? I haven't seen that.

I have seen concerns about advocacy organisations that state MCAS, hEDS and POTS are established co-morbidities with ME/CFS without providing evidence.

I have seen concern about doctors telling patients they have conditions without also telling them that the labels are not recognised as established diagnostic categories recognised by all doctors

I have seen concerns that if patients tell other doctors their list of diagnoses, this may lead to false asssumptions being made about what is wrong with them, to their detriment.

And I have seen concerns about doctors prescribing treatments that have not undergone clinical trials to test efficacy for particular symptoms, without warning patients that they are experimental treatments, thus resulting in patients not having the opportunity to give fully informed consent.

I think these concerns are legitimate in a situation in the UK where some very sick people are being denied hospital care because doctors don't believe MCAS and hEDS are real causes of the pwME's symptoms.

I agree with every concern raised here. 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 think it's a matter of how we approach and what we expect to get out of it. I am of the opinion that it won't sway doctors biases against MECFS that much because you can't argue rationally against an irrational prejudice, and prejudiced people will always find something those they are prejudiced against are doing to 'deserve it'. I think getting doctors onside will take a different tactic but I don't know what.

If we are hoping to educate patients to get more people to join the ranks of the S4ME aligned, and possibly get charities to stop using biobabble, that might be a more achievable goal.

 

[Trish]

I think it would be very helpful in this situation if @Jonathan Edwards, with input from members, wrote an article setting out the evidence for and against the usefulness and validity of MCAS and hEDS as diagnostic labels, his views and his concerns, particularly in the context of these being added to ME/CFS diagnoses.

It would need to also include a clear statement that the symptoms are real and have biological causes, often unclear, and the problem is with doctors either misusing or disbelieving diagnoses and the lack of clinical trials for treatments.

If we had a single clear statement people could be referred to, we would not need to keep having this same conversation, and we would have something to refer people beyond the forum who may be misquoting or misunderstanding the views being expressed.

 

[Trish]

It would probably also be useful to ask a clinician, or clinicians' organisation, to provide us with a statement of the evidence base they are using to justify adding these diagnoses for their patients with ME/CFS, rather than leaving it to patients to try to defend their diagnoses.

If anyone knows such a clinician willing to join the forum to explain their work in this field, that would be interesting, I think.

I have avoided reading the literature or joining in the discussion on one side or the other because I don't have the capacity to take on more, for a diagnosis nobody in my area of the UK is likely to make for me, since we don't even have any doctor with genuine expertise in ME/CFS in my area as far as I know.

 

[EndME]

I think it would be very helpful in this situation if @Jonathan Edwards, with input from members, wrote an article setting out the evidence for and against the usefulness and validity of MCAS and hEDS as diagnostic labels, his views and his concerns, particularly in the context of these being added to ME/CFS diagnoses.

It would need to also include a clear statement that the symptoms are real and have biological causes, often unclear, and the problem is with doctors either misusing or disbelieving diagnoses and the lack of clinical trials for treatments.

If we had a single clear statement people could be referred to, we would not need to keep having this same conversation, and we would have something to refer people beyond the forum who may be misquoting or misunderstanding the views being expressed.

I do wonder whether one article on all issues will be as fruiftul as we hope. @ME/CFS Science Blog wrote one article on the "issue with POTS in ME/CFS" and I think some got the message or at least understood that perhaps things aren't necessarily as they are said to be. I am afraid that one article on all problems combined might not be able to achieve that and will be too complicated for most to understand, especially when they've repeatedly been told otherwise by physicans, advocacy groups and others. Perhaps one article on each problem by itself would come across as "less dismissive/confrontational" and will allow the pieces to go into greater detail.

Handing these article to advocacy groups and them circulating them would be a great goal. One might be able to expect some substantial resistance against this. Certain physicians have made a career out of these things and many advocacy groups and patients are full in support of PAIS being the way forward, for funding, lobbying and infrastructure.

 

[Kitty]

what we expect to get out of it

Communicating that they're being misled, I guess, not only to their own detriment but to the detriment of the whole community.

Letting them know that if they push unfounded theories they are unwittingly harming other people, in ways that will be difficult to grasp unless they open their minds to the notion that some doctors tell people what they want to hear. And understand that other doctors will dismiss patients who've bought into those ideas, which is where the harm comes in.

But perhaps we could be clearer that it's a phase many of us went through before we began to understand some of the motivations at work. People build careers and get rich from selling hope and answers to sick people, as they have for millennia. It's a pretty despicable trade, and the internet has made it easy for the resulting harms to spill out internationally.

The doctors and therapists and influencers are never going to take responsibility for their actions. But we can choose to take responsibility for ours.

 

[forestglip]

Another point I think is worth noting is that MCAS and hEDS as diagnostic labels are potentially very important to patients, just as ME/CFS can be.

They're 'official' diagnoses that can make a patient feel more secure about their symptoms being believed. And they provide community - like S4ME for ME/CFS, there are online groups for MCAS or other diagnoses.

Saying the concept of MCAS or hEDS doesn't make sense might make people fear those things those things being taken away.

So I wonder if it might be good to try to suggest possible alternative labels when criticisms of these diagnoses/categories come up - labels which are symptom-based instead of mechanism-based. That may make it more acceptable for patients to discuss these things.

And I'll echo a theme of some of the above posts. I think it's all too easy to misinterpret criticisms of these diagnoses as being about symptoms not being real. Patients may see a sentence talking about MCAS not having evidence behind it, and I think they might not find it obvious that a specific mechanistic hypothesis is in question, not any of the symptoms that MCAS describes. Maybe it's something to keep in mind when wording such claims.

 

[Kitty]

They're 'official' diagnoses that can make a patient feel more secure about their symptoms being believed.

But the problem is that they're not accepted diagnoses, and using them in consultations may mean the patient is less likely to be believed. That's what I meant about people unwittingly harming themselves.

 

[forestglip]

But the problem is that they're not accepted diagnoses, and using them in consultations may mean the patient is less likely to be believed. That's what I meant about people unwittingly harming themselves.

Sure. I'm just talking about the patients' perspective in order to possibly figure out how to make discussion about this more palatable. A real, official doctor gave them the diagnosis, so it can feel just as accepted or real as any other diagnosis to them.

 

[Trish]

I think any article also needs to make it clear that this is work in progress and it may be that further research will provide more (or less) support for a mast cell activation disorder and some version of a connection between joint hypermobility with othe symptoms for some people, and specifically for pwME.

My limited understanding is that there is still much more research needed and clinical trials to test efficacy of meds before the labels can be attached to individual patients. And there is as far as I know no epidemiological evidence saying that pwME are more likely than anyone else in the population to have hypermobile joints or to experience allergies or have overactive mast cells. I have no idea whether there is any evidence that the problems some people have with food sensitivites have anything special to do with mast cells that is specific to ME/CFS.

I think the purpose of such an article would be
to reassure pwME that nobody is questioning the biological reality of the causes of their symptoms,
to challenge ME/CFS organisations to be careful about assuming the connection between ME/CFS and these other conditions is established, and to be cautious in their literature,
and to ask doctors to be more careful in choosing and explaining to patients the diagnoses they make.

Forward ME in the UK made a statement warning about the promotion of CCI and other spinal surgeries being touted for pwME on no evidence. Yet some ME organisations list CCI/AAI as comorbidities or possible causes of ME/CFS.

Maybe this is another situation where caution is warranted.

 

[V.R.T.]

But the problem is that they're not accepted diagnoses, and using them in consultations may mean the patient is less likely to be believed. That's what I meant about people unwittingly harming themselves.

The thing is that neither is MECFS, at least in the uk. Officially it's in NICE or whatever but doctors avoid diagnosing it and think it's just shit life syndrome or whatever. If I was mild I would avoid mentioning it at most medical appointments for this reason.

So all of these people who have ME or LC already have a dx that is against the medical orthodoxy. And POTS seems more concrete with the heart rate issues etc...

 

[Kitty]

I think it's all too easy to misinterpret criticisms of these diagnoses as being about symptoms not being real.

Yes, I agree there.

Maybe people also need to be more accepting of the fact that if they go to a GP saying they get a lot of allergy-like reactions and that antihistamines help, the doctor may say they don't know why it's happening. Which is fine, because it's the truth. Doctors don't know why lots of symptoms happen.

What matters in that conversation is that antihistamines help. There's a problem and it's being addressed even though it doesn't have a label or an explanation. That's a successful outcome.

 

[Jaybee00]

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

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.

Diminishment of executive function aka cognitive impairment aka brain fog is one of the core features of ME/CFS. ADHD is also characterized by executive dysfunction.

So I don’t think it’s really helpful for ME/CFS patients to also claim an ADHD diagnosis because it is already baked into the ME/CFS diagnosis. It’s like a doctor giving a patient an ME/CFS diagnosis AND an additional fatigue diagnosis.

 

[Nightsong]

One other point I'd make is that, of the private physicians in the UK who have made a practice out of seeing pwME - the ones that severe & very severe patients tend to turn to when their needs are not being met or they're having difficulties with the NHS, including e.g. requiring social care or feeding support - I think all of them, now, are hEDS-POTS-MCAS "believers" and, from what I've heard, many seem to have a very low threshold for making such diagnoses. The NHS leaves a subset of patients with nowhere to turn but to those who will give them these labels.

And even a few current academic physicians think the concept is credible, to the point where the recent NHS e-learning module for severe ME/CFS (which I understand was written principally by Dr Strain) contains statements such as these:

Emerging evidence suggests a subset of ME/CFS patients has mast cell activation syndrome (MCAS), contributing to symptoms like flushing, hives, allergic sensitivities, and even gut issues.

When this kind of thing is in official NHS training material it is difficult to know where to begin to tackle it.

 

[Kitty]

Maybe something else we need to consider is that being given a set of initials like "MCAS" may confer membership of online groups.

It's a tricky area because groups are so important to people with long term illnesses. They may be the only real source of support some of them have.

But not using trendy acronyms doesn't necessarily deny entry, or revoke existing memberships. They're still groups of people struggling with similar symptoms, and in many cases the support and understanding would still be there.

 

[StellariaGraminea]

I find this thread interesting from the point of view of that historical group of people with very real health problems who grouped themselves (in some cases) or were grouped by some Drs under a label which was disbelieved & stigmatised, and still is. I.e. Me/cfs. And now we're talking about an overlapping group of people with very real health problems & judging the labels that they use to try to describe their v. real experiences in order to organise and help themselves.

I've been fortunate not to have any symptoms consistent with what is roughly being described as MCAS for example. But whatever the rationale and unknown biology behind those health experiences, I've been in enough patient groups over enough years to recognise a familiar experience being described by patients that, for all the problems with labelling it, is currently being labelled MCAS. I also see how that label has been useful for patients to identify others with similar experience, share tips for dealing with it & in quite a no. of cases genuinely make their QOL better by intervening using tips from others.

Yes ideally all of that would occur in a healthcare encounter & protect patients from unscrupulous grifters or just plain dangerous advice. But the reality is there are many health experiences (not just ME/CFS) that are routinely dismissed by medical professionals and stigmatised.

I'm not sure how wise it is to focus frustration on patients who are trying to deal with unstudied, real, poorly understood health experiences, and suggest taking away their 'label' which is a useful hook to hang some experiences on & locate support & others who understand what they're going through. The problem isn't the patients here, it's the medical system.



I do see the need for strongly warning patients how the medical profession holds stigmatising views of those labels & that it's much better when in a medical encounter to use generic descriptions rather than these labels if they want to be taken seriously. I also think advice (if that's the right word) is needed that patients would hold those labels lightly, as placeholders for describing health experiences that hopefully in the future will be better explained and better labelled. But I really think the issue is more about teaching patients to protect themselves from a limited and unscrupulous medical system, and about limiting their use of labels with most medical professionals, than it is about taking away their own descriptions of real illness experiences.

 

[StellariaGraminea]

In my personal experience, the label of POTS: (1) helped me articulate very real, life-altering difficulties I was experiencing, (2) helped me identify concrete things (in my case, especially medication) that led to the biggest improvement in QOL of this illness, (3) help me find other people experiencing similar for support & sharing experiences.

But, I'm aware of the stigma & lack of understanding most Drs hold about a label like POTS & I don't discuss it with Drs. It means a large part of my health experience is invisible to the medical system, but ultimately that's not my fault.

Personally I also hold the label lightly, I see it as having its uses but also that it's an incomplete explanation and the boundaries of it are poorly researched etc. I have purposely avoided bringing it up in new medical encounters because I recognise it's stigmatised by Drs but also that it's useless telling Drs your medical history of something that they have no brain map for anyway, even if it has caused you significant disability.