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

[Kitty]

I wonder whether there is a way as a forum we can make a statement to clarify that the issue is not about the reality of any individual's symptoms

Perhaps we should keep underlining that the debate is about how the symptoms are described, not the symptoms themselves. One of the reasons for debating it is clarity, without which we can't make scientific progress. Another is that the names of some syndromes function as code words that may lead to doctors making unhelpful assumptions.

So we argue for sticking to simple descriptions of the symptoms we get. It doesn't guarantee we won't be dismissed, but it won't increase the chances. And it might help the doctor work out what's going on, which could be something different.

The debate is about scientific progress and patient welfare, not an attempt to belittle, exclude, or disbelieve anyone.

 

[Trish]

This is the MEA, presumably Dr Shepherd, answering a question about comorbidities in 2023
https://meassociation.org.uk/medical-matters/items/what-are-co-morbid-conditions/

Co-morbid conditions are separate illnesses that are (or appear to be more) more common, or are linked in some way to a health condition (such as ME/CFS) that you already have.

In the case of ME/CFS there are a number of conditions where we know from both patient evidence and research evidence that you are more likely to develop at some stage in your illness. These include:

• allergies such as hay fever
• chemical sensitivities
• fibromyalgia
• hypermobile joint syndromes
• interstitial cystitis
• irritable bowel syndrome symptoms
• migraine-type headaches
• postural orthostatic tachycardia syndrome (PoTS)

There are also some other conditions where the evidence of a link to ME/CFS is less certain and the situation is therefore not clear. These include: endometriosis, mast-cell activation syndrome and tempero-mandibular joint dysfunction.

Unfortunately, we don’t have yet any robust evidence as to how common each of these conditions are if you have ME/CFS. There are some co-morbid conditions – such as irritable bowel type symptoms – which are fairly common if you have ME/CFS. However, others are less common.

These co-morbid conditions can be present before ME/CFS was diagnosed, occur at around the same time as ME/CFS was diagnosed, or may occur once ME/CFS is established. Whatever the timing, this suggests that there are some similar causative pathways involved in all these conditions.

Having ME/CFS does therefore place people at increased risk of developing one or more of these conditions as time goes on. But some people with ME/CFS won’t develop any of them at all.

As you say, the new NICE guideline recommends that consideration should be given to whether any of these conditions are present when a diagnosis of ME/CFS is being made – as they will need to be properly investigated and managed as well.

 

[EndME]

Maybe a starting point is to collect information on what each of the main UK ME/CFS and Long Covid organisations are saying about comorbidities, and of course other countries as well if members involved in this discussion can contribute information about their local ME/CFS organisations.

Aren't most Long Covid organisations heading towards a PAIS direction? At times maybe not even because of their own thoughts but maybe just because of the politics involved. I would not be surprised if there are situations were a contrary approach would lead to "being cancelled".

 

[Utsikt]

Agreed. To me the question is how we approach that and the justification and arguments we use to do so.

Maybe we can focus on the message of ‘this makes communicating the good new scientific discoveries (which yiu as a charity are supporting) harder’?

Is that the problem, though? That seems to be more an issue with every paper being hyped as exciting based on what the authors claim themselves. So the truly exciting ones drown.

Perhaps we should keep underlining that the debate is about how the symptoms are described, not the symptoms themselves.

I don’t think the name of the symptoms matter. If you want to call it OI or PT/OT/POT or feeling unwell when sitting or standing, that’s fine. The issue is when there is talk about syndromes or causes without sufficient evidence.

Aren't most Long Covid organisations heading towards a PAIS direction?

Or IACC (infection associate chronic conditions).

————

The only situations where I think patients need to do better is when they keep suggesting diagnoses to other patients. Not as in saying that you might want to see a doctor about that, but the «you have MCAS etc., and should follow this protocol by this person». But that’s not unique to the ME/CFS space, it’s everywhere.

 

[Kitty]

I don’t think the name of the symptoms matter. If you want to call it OI or PT/OT/POT or feeling unwell when sitting or standing, that’s fine.

Not to each other. But might there be something in going to doctors with symptoms instead of diagnoses? Allowing them to do their job and reach their own conclusions?

Obviously it won't solve all the problems, and it'll do zilch to make dismissive doctors less dismissive. But it might help improve relationships, especially when speaking to new clinicians. It might even contribute to better diagnosis in a few cases; things could be getting missed among the forest of acronyms.

I don't know how we approach the issue that people have been led by internet content to believe that there's always an answer, always a name for whatever they have. If they don't have a name, they're either not being believed or should keep looking until they find a doctor who will give it a name. Doctors could certainly be better at explaining that we don't always know.

 

[Jonathan Edwards]

This is the MEA, presumably Dr Shepherd, answering a question about comorbidities in 2023

That is a fairly typical muddled MEA sort of list.

 

[Trish]

On the AfME website:
https://www.actionforme.org.uk/campaign/overlapping-illness-alliance/

Working together through the Overlapping Illness Alliance
We are proud to be part of the Overlapping Illness Alliance (OIA) - a partnership of charities joining forces to drive positive change in the recognition, care, and support for people living with complex, often misunderstood conditions.

We know that many people with ME often experience more than one other condition at the same time. These conditions often share a range of debilitating symptoms - such as post-exertional malaise, crushing fatigue, persistent pain, dizziness, brain fog, and gut problems - yet are often treated as separate, unrelated illnesses. Too often, this leads to people receiving fragmented care and uncertainty.

Through the Overlapping Illness Alliance, we're working together to change this, recognising the power collective action can have in raising vital awareness, improving understanding, and calling for better healthcare and research.

The Alliance currently represents those affected by Myalgic Encephalomyelitis (ME), long Covid, Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder, Postural Orthostatic Tachycardia Syndrome (PoTS), and Mast Cell Activation Syndrome (MCAS).

However, this is just the beginning. The Alliance will grow as we move forwards and we will be welcoming more organisations who share our aims, in the New Year.

 

[Jonathan Edwards]

On the AfME website:

That is an intriguing one. The logic seems a bit haywire:
We know that many people with ME often experience more than one other condition at the same time. These conditions often share a range of debilitating symptoms - such as post-exertional malaise, crushing fatigue, persistent pain, dizziness, brain fog, and gut problems - yet are often treated as separate, unrelated illnesses. Too often, this leads to people receiving fragmented care and uncertainty.

The suggestion seems to be that people with ME/CFS are getting PEM and crushing fatigue from different diseases at the same time. So, yes, maybe they should not be considered 'separate illnesses' or even 'related illnesses'.

If there really is an association between postural tachycardia and symptoms of mast cell activation and this list which is basically ME/CFS, why not call it ME/CFS and say that it seems to be associated with postural tachycardia and allergic type phenomena rather than suggest that the list of symptoms belonging to these other syndromes as well.

And it is always the same list despite the negative evidence for any association with hypermobility or mast cell problems.

 

[Utsikt]

Not to each other. But might there be something in going to doctors with symptoms instead of diagnoses? Allowing them to do their job and reach their own conclusions?

Oh, absolutely. I might have misunderstood earlier. I would only describe my symptoms in layman terms (even for the ones I know the medical terms for) - that’s usually all they ask for anyways.

 

[Formerhuman]

The reality for me is that if I was talking to a colleague about a patient I would say they report postural tachycardia, or maybe orthostatic tachycardia (you don't need both postural and orthostatic). That seems entirely adequate.

What would you say to your colleague about a patient who complained of orthostatic intolerance and tachycardia, fatigue, concentration problems, and constipation, which the patient gradually developed after a viral infection a year ago? No PEM, no any abnormal blood tests. (That's what cardiologists call POTS)

 

[SNT Gatchaman]

a patient who complained of orthostatic intolerance and tachycardia, fatigue, concentration problems, and constipation, which the patient gradually developed after a viral infection a year ago? No PEM

I'd try and pin down if the fatigue, concentration problems etc show a pattern that did correspond to PEM: ie following exertion, with a delay, out of proportion.

 

[Eddie]

What would you say to your colleague about a patient who complained of orthostatic intolerance and tachycardia, fatigue, concentration problems, and constipation, which the patient gradually developed after a viral infection a year ago? No PEM, no any abnormal blood tests. (That's what cardiologists call POTS)

If it was clear that PEM wasn't a factor I would just use the term OI. I think the POTS label does have some use but primarily in a research setting for grouping people with OI that have a certain HR/BP responses. Given the baggage with POTS and the uncertainly surrounding diagnostic criteria, I do see a good case for just ditching the label and having individual studies dictate what criteria they want to recruit on.

I'd try and pin down if the fatigue, concentration problems etc show a pattern that did correspond to PEM: ie following exertion, with a delay, out of proportion.

But let's say that there was some inclination that the fatigue and concentration problems did get worse following exertion. Is that really someone we should include in studies on ME/CFS? It isn't clear to me that this person's symptoms would suggest a underlying pathology that is the same as someone who experiences a more typical pattern of PEM.

PEM for me is mostly synonymous with post exertional headache and dizziness. I have constant symptoms of OI, fatigue, stomach problems ect. but for me the only clear consequence of exertion is a (often next day) bad headache and the associated light/sound sensitivity. That makes it easy to avoid the use of any labels with doctors/friends, I just tell them I have OI, fatigue... and get bad headaches with exertion, concentration, heat ect. But that still leaves the question of whether the ME/CFS label is an appropriate label in the context of research studies given PEM is mostly "PEH" for me.

 

[SNT Gatchaman]

I'm quite similar to you Eddie in terms of types of symptoms, but I don't think the specifics on the list is as important as the temporal pattern of their development/increase. Ie I'd maintain PEH == PEM just as much as other symptoms such as "sore throat, flu-like symptoms, swollen lymph nodes" that we often see described.

 

[nataliezzz]

I don’t see any other reason for prescribing beta-blockers as treatments for POTS in general. If it’s believed that blood pooling is an issue - how does it make sense that lowering the HR would improve the situation?

I wasn't suggesting that they're saying tachycardia isn't contributing to symptoms at all, just that I haven't seen "official" sources saying that it's the only contributor in POTS, and from what I have seen, it is usually described as a compensatory response.

Interestingly (and anecdotally), beta blockers were one of the most helpful things for PEM for me. Even though I didn't have overt tachycardia on standing (or really any other symptoms - I had lightheadedness/losing vision on standing before I started bupropion, but the bupropion pretty much resolved that), I used to get tachycardia quite easily on exertion; e.g. my HR would be in the 120s just walking short distances. Beta blockers brought it down into the 90s. I felt better during these types of activities (e.g. walking at the grocery store - that was the main walking I did at the time) and it reduced PEM severity. I went from having to take clonazepam at least a couple times a month for bad PEM (the only thing at the time that really helped reducing the "tired but wired" feeling and sensory sensitivities in PEM - I later discovered Vicodin had a similar effect) to - after getting on beta blockers - taking it maybe once every few months.

 

[hotblack]

But I am not accepting anything 'posited by medical professionals for their own failings' am I? At no point have I blamed patients as far as I am aware. The reason for taking action is that people with ME/CFS have now been completely excluded from physician care in the UK and I think it at least very likely that has been contributed to by the flow of diagnostic disinformation. I am simply suggesting that it might be tactically helpful to try to reduce the flow of disinformation.

You are, in this paragraph, repeating what I see as a the problem. You do not blame patients directly but you do state that the reason to take action is because patients have been excluded from physician care and that has been contributed to by the actions of patients. My counter is this is an excuse used by people for their own failure, that if they really saw a problem they would treat us whatever and that using this message makes our job harder not easier. I’m just repeating myself again. We seem at an impasses and it is exhausting.

How can I put this another way…

Perhaps if I ask you start with the assumption that I understand and accept your motivation and goals, I accept what you have observed.

Now, what is it we are trying to achieve? We’re trying to get advocates and representatives of patients to change. For them to change their messaging and ideally to get support for this change from patients.

So consider the audience. These are people who to be blunt have often faced years of medical neglect and abuse. Or people representing them. So regardless of your or our intentions, if credence is given to excuses made by those responsible for the failure, for the abuse, we will face more opposition and more barriers than we need.

Some arguments that in some people’s minds add weight, in others are a distraction, undermine it or are even an insult.

So maybe try this approach, in all things take the position that the patient is blameless. Don’t say it, comminicate in a way that you do not need to say it. It may change how we communicate and I think be more palatable and successful.

Tbh this is an approach I’ve tried to take when dealing with Doctors. Blame the institutions, the lack of teaching or lack of good science and research, whatever. But don’t make it personal or upset the ego and people are often more amenable to new ideas and to change.

Sometimes we have to do this with doctors, sometimes with patients. The audience matters. That’s the tactics I am suggesting we need to take to counter the disinformation.

Edit: if you disagree that’s fine, I’m just trying to explain a point of view and my feeling of exhaustion and any frustration is at failing to be able to do that, not at you or anyone here. Sometimes debate and disagreement is fun, with ME/CFS it often becomes less so after a certain point. So I really should probably park this one now. Thanks for listening.

 

[Trish]

I don't have the capacity to read back over this discussion, so I apologise if I am repeating what others have said better than I can.

I think we need a clearly set out summary of the problem under discussion, the aim of any advocacy action, and the strategies and tactics to try to achieve that aim and the pitfalls along the way, and some idea of whether this is a situation we as a forum can or should try to do anything about.

Here's my attempt at a bare-bones summary:

The problem:

There are some diagnostic labels that we are told are not universally agreed by clinicians as useful for clinical care. These include MCAS, hEDS, POTS, and may also include IBS, ME/CFS, FM and FND.

Some clinicians seeing any or all of these labels applied to patients assume some or all of them are code for psychosomatic, and act to patients' detriment accordingly.

In some cases this is leading to pwME in the UK and possibly elsewhere in need of urgent care being refused help on the assumption that their need is psychiatric. This can be and sometimes is disastrous, leading to immense suffering and death.

Some other clinicians may be applying some of these labels rather too freely to pwME, for example a pwME with bendy joints as per the Beignton scale and joint pain they may be told they have hEDS, or if their heart rate goes above 30 on standing they have POTS, or if they have some allergies and/or food or chemical sensitivities, they have MCAS, or if they have muscle pain they have FM and so on.

There is significant overlap in the symptoms listed as common in ME/CFS and hEDS, MCAS and POTS in some diagnostic criteria, so that raises the chances that a doctor with an interest in one or more of these sydromes will diagnose pwME with them unnecessarily, since they may all be part of ME/CFS, not a separate condition. It should not be necessary to add an extra label in order to get medical help for the relevant symptoms.

The labels MCAS, POTS and hEDS all differ from ME/CFS in that they imply specific biological features underlying symptoms which may not be accurate or useful, leading to confusion among pwME about what is causing their symptoms. (this can also be true for ME/CFS in practice when clinicians following, for example,BACME guides, provide inaccurate biological explanations and deductions about treatment)

As far as we know there is no evidence that any of these syndromes are more or less common in pwME than in the general population, but many patient organisations are listing them as common comorbidities of ME/CFS. This may be causing problems for pwME who are encouraged to find a willing doctor who will confirm whether they have these comorbidities.

ME/CFS has a wider range of common symptoms, including OI, GI symptoms, muscle and joint pain, and food sensitivities. We may seek medical help with any of these symptoms and should not need to define them by a different syndrome label to ask for medical help with them.

The targets for change:

ME/CFS charities -
ask them to remove unevidenced claims of common comorbidities as misleading and unhelpful.
Warn them that publicly linking ME/CFS with charities supporting other contested diagnoses is playing into the hands of the doctors organisations holding psychosomatic/psychobehavioural views of ME/CFS.
Ask them to be wary of recommending clinicians or clinics which too freely add extra diagnostic categories for pwME.

Doctors organisations - eg UK Royal Colleges - educate them about ME/CFS.

ME/CFS clinicians warn them about the pitfalls of adding extra diagnostic labels in cases where ME/CFS covers the symptoms already, and for which the scientific and clinical basis is at best unclear.

Pitfalls of us raising this issue:

The widespread social media and ME/CFS organisations enthusiasm for diagnosing comorbidiities and patient support for this means any kind of advocacy needs to be done extemely sensitively, to avoid any impression of patient blaming or gaslighting.

Is this the right thing for any of us on the forum to focus our advocacy efforts on?

I have my doubts to be honest. I think as a forum campaign it is a non starter.

We have among our membership pwME who find the treatment and support they are getting for their diagnosed POTS, MCAS, hEDS, and so on helpful. Mounting such a campaign carries real risks of leaving those members feeling alienated and unsupported. That is far from anyone's intentions, but is already happening. We are all already very vulnerable from the gaslighting and lack of care we receive from having an ME/CFS diagosis.

Very few of us have the scientific or medical knowledge to judge fairly the usefulness of these sydrome labels and it's not right for us to rely entirely as a forum on the experience, knowledge and advice of one individual, however trusted that individual and well founded their arguments, as the basis of what would be a very divisive campaign among the ME/CFS community.

We can still hope to contribute to better information about other diagnostic labels, including the ones listed and FND and possibly others through our threads examining the research evidence. That is our strength that may in the long run contribute to better understanding.

For me, a much higher priority for my own limited advocacy efforts is the continued and escalating problem of BACME, NHS, and MEA support for the current UK rehab psycho-behavioural appoach to ME/CFS provision.

However, I am very grateful to @Jonathan Edwards for his patience and clarity in explaining the underlying science, medical experience and concerns on this topic, and for ongoing efforts to try to make the situation better for us all. I fully support you @Jonathan Edwards in whatever you can do individually to educate the UK ME/CFS charities about the pitfalls of the current situation with MCAS, hEDS and POTS, and to educate your fellow doctors.

Edit to add:
This is just my own current conclusion. I am not speaking for the forum committee or anyone else.

 

[Felis Catus]

Oh, absolutely. I might have misunderstood earlier. I would only describe my symptoms in layman terms (even for the ones I know the medical terms for) - that’s usually all they ask for anyways.

(Having written the post, I feel the need to put a disclaimer at the beginning to say that I'm not responding directly to you. I just used the quote to add what happens at certain places when you are a good patient talking about symptomes, not syndromes.)

I was doing exactly that for almost 2 years. I didn't even know POTS existed. I was told by medical professionals that I had a fear of standing. When I said I wasn't afraid of standing, they said I was indeed. I'm not sure those were professional unbiased assessments and the dream outcome we have in mind if we just talked about symptomes. I'm afraid the problem is deeper than that.

 

[rvallee]

No, I don't think it is. It is true of ME and probably of CFS, both of which in their historic uses were maybe as bad as the others. But when doctors talk of ME/CFS these days they are mostly talking about an accepted biological syndrome. GPs may still disbelieve. But ME/CFS is not a deliberate codeword for nothing wrong. The doctors who think there is nothing wrong will call it MUS or enduring symptoms or. ME/CFS was devised deliberately to get away from the double meaning.

I have to be honest, I'm not seeing this, at all. It sounds nice, but it's not happening. Nothing has changed in the old attitudes as far I can see. The % of physicians who think it's something worth bothering with is probably about the same as it was 10, 20 or 50 years ago: close to 0. Even Long Covid hasn't changed a damn thing. In fact it made things worse because it encouraged an even bigger proliferation of junk studies and trials pretending that exercise is the answer, or whatever.

From what I can see psychosomatic ideology is fully accepted as the answer to every symptom that doesn't have a known pathology, or some vague nonsense about stress or whatever, the ideologues behind it all place us in their trash bin, and barely anyone in the profession objects and so at best tacitly agree. There is a % who disagree, but not even a handful are openly critical about it because it's still a career-killer.

I long for the day we get there, but in the minds of 99% of physicians any of this acronym soup is in the same category as "chronic fatigue" is to them and they'd rather never hear about it or see a patient with it. Plus it's all so screwed up that things like migraines, endometriosis and chronic back pain are also thrown in the lot. In most measurable ways, medicine has actually gotten worse about this over the last 3 decades.

I'm sure that most physicians will absolutely swear up and down that they always thought so once we have a breakthrough, but a private survey of health care professionals happening today would reveal that ye olde belief systems are the only force in the game.

If we're to be realistic about our opposition, we also need to be realistic about where we stand. I agree that the evidence is growing, but it clearly makes no difference.

 

[StellariaGraminea]

The problem:

...

Some clinicians seeing any or all of these labels applied to patients assume some or all of them are code for psychosomatic, and act to patients' detriment accordingly.

I think the kernel of the problem = the clinicians, their education, their false beliefs etc. Everything else follows from that.

If they respected ME/CFS as a diagnosis, the other labels would have been water off a duck's back. E.g. imagine if people with MS were coming to a dedicated clinic, also spouting "woo". Would they have shut down the clinic on the basis of the woo? I think not.

It should not be necessary to add an extra label in order to get medical help for the relevant symptoms.

But in a number of cases it is, unfortunately.

This may be causing problems for pwME who are encouraged to find a willing doctor who will confirm whether they have these comorbidities.

It may be causing problems, but it may also be actually helping pwME. I needed to know about "POTS" to get help with severe OI symptoms - that help in my n=1 made a v. significant improvement for me. It may not have, I was lucky to land on something that helped. It also took 2yrs to find a Dr who I came across by chance. (I chose only that Dr to see, and researched as much as I could to be sure he wasn't going to be a gaslighter & psychologiser. I felt a massive risk of getting junk written on my medical file and second-guessed myself multiple times before finally booking an appointment.)

It's messy: I'm not convinced people aren't getting benefit from those labels while at the same time greatly risking being dismissed & gaslighted more, completely by chance depending on their luck seeing or avoiding a given medical professional.

ME/CFS has a wider range of common symptoms, including OI, GI symptoms, muscle and joint pain, and food sensitivities. We may seek medical help with any of these symptoms and should not need to define them by a different syndrome label to ask for medical help with them.

N=1 again, but for me the knowledge of a different label led to concrete help. In many patient groups I've seen people describing experiencing similar concrete help - that made a difference to them & improved QOL, even if not a RCT. Of course there's the opposite risk also, of being harmed.

The targets for change:

To my mind the only target for change is the medical profession - and a foundational aspect of it at that - & it's exceedingly unlikely as patients we can do much about it in this situation. I completely get JE's frustration & understand where he's coming from. But it boils down to "If only patients behaved themselves better & used the right labels, avoided the wrong ones etc etc etc, we might have some hope of being taken seriously by clinicians". I don't think that's an accurate framing. As said earlier, I strongly believe those clinicians used "woo" as an excuse for an attitude they'd already landed on much earlier.

Someone earlier described the dynamic as an abusive relationship where Drs hold all the power, and effectively that's what it is. I do see value in raising charities' and patients' awareness of this specific abuse dynamic so that patients can protect themselves from it if at all possible. But even knowing about it, it's not possible to protect yourself from it in all circumstances.

 

[V.R.T.]

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.

@Jonathan Edwards are there any academic physicians you know in the UK or even elsewhere who might fit this bill?

I know you're already thinking about this. I assume from your posts in this thread you have had some difficult conversations with doctors already, but surely there must be one rheumatologist or immunologist in the UK who is sharp enough to see through all the bullshit?

Edit: Perhaps there is an oncologist with similar nous as Fluge and Mella?