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

[Jonathan Edwards]

Isn't that true for ME/CFS as well?

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 suspect the doctor 20 years ago would have talked about ME.

 

[Jonathan Edwards]

I wonder to what extent the diagnosis each of us gets depends on the particular medical specialism we see. So a cardiologist will diagnose POTS, a GI specialist IBS, an allergy specialist atopy or MCAS, a rhematologist hEDS and/or FM, and so on. If we see several specialists about different aspects of ME/CFS, it's hardly surprising we end up with a muddle of labels, and all those specialists may reject ME/CFS as not a real diagnosis.

But this misses the point that ME/CFS is a sensible pragmatic syndrome term that covers a set of linked symptoms with a core feature of PEM with no implication of cause. The others all presume some unfounded cause and are so vague that prevalence rates vary from 1 in 5000 to 1 in 20. For ME/CFS there is uncertainty but nothing like that. ME/CFS is the legitimate diagnosis for members here because it implies nothing more than their shared clinical problems. The other diagnoses are very different.

 

[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.