The Suggested Relationships Between Common GI Symptoms and Joint Hypermobility, POTS, and MCAS 2024 Quigley et al

Abstract

An increasing number of reports suggest an association between a newly recognized disease cluster and significant and often disabling gastrointestinal (GI) symptoms. This cluster is composed of diagnoses of hypermobility spectrum disorders (HSDs) such as joint hypermobility and hypermobile variant Ehlers-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS). The diagnosis of these entities remains a challenge, as the pathophysiology of each has not been completely elucidated and the diagnostic criteria continue to evolve.

This article describes a cohort of young adult females who shared similar GI symptoms, with intractable nausea and vomiting being most prominent and gastroesophageal reflux disease and constipation also occurring. Most strikingly, these females also exhibited or reported a history of HSD, hEDS, POTS, and/or MCAS. The clinical course of their GI symptoms was remarkable for considerable challenges in management, and artificial nutritional support proved necessary for some. This article describes the clinical features and outcomes of their GI manifestations, examines how these manifestations might be linked to their systemic syndromes, and discusses whether a shared pathophysiology exists. Pending the definition of a common thread between these conditions, this article seeks to raise awareness of their clinical definitions and foster research that will hopefully improve outcomes for these patients.

Open access, https://www.gastroenterologyandhepa...mptoms-and-joint-hypermobility-pots-and-mcas/

 

Maybe physicians need to ask themselves whether it is them that are making people ill by inventing all these non-existent diseases. These are the same people who are denying people with ME/CFS life saving nutritional support on the grounds of their illness being 'functional'.

 

Isn't that a bit backwards? I thought that physicians who are sceptical about those conditions or the idea that they occur in a cluster would tend to also discount ME/CFS as psychogenic/functional (and would actually lump it in with all those other conditions). Also this paper seems to run counter to the experience of severe pwME who are left to starve - these patients were given nutritional support despite a lack of understanding of what caused their intolerance. Like we are advocating to happen for patients with ME/CFS. Right? Am I missing something?

 

Yes but the same gastroenterologists who are finding themselves having to give this support for 'functional' (i.e. imaginary) problems associated with the putative real structural or biochemical (MCAS) problems they have invented are also rewriting review articles saying it is time they stopped feeding these people and gave them psychotherapy. The whole thing is in confusion because there is no critical thinking involved. The review papers make no sense.

Well the main physician who is skeptical about these seems to be me and I am totally convinced of the biological reality of ME/CFS. The categories are not in any way comparable. ME/CFS is simply a category of ill people for whom we need to find a disease mechanism. The others are putative disease mechanisms based on hype and muddled thinking. I am sure that people who cannot eat and get labelled as EDS have a real biological problem. It is just that it is not EDS.

But I do also worry that giving patients these names that suggest that they have obscure and potentially progressive disorders nay lead to management that actually makes them even more ill. Giving fludrocortisone may be a very bad idea long term. Making people think their connective tissues are progressively falling apart may have a significant negative impact and so on. And in that sense I think these names may be a bit like the way 'ME' on its own, rather than ME/CFS, is used by physicians to imply she progressive neurological disease, based on the acute picture at the Royal Free seventy years ago.

 

Just to add, it pains me to see such a high proportion of my physician colleagues swallowing all this stuff about hypermobility. (They are less receptive to MCAS.) The first ten years of my research programme focused specifically on connective tissue biology and I used to write the medical textbook chapters on it. The hypermobility stuff is all speculation and much of it plain wrong. So you have this weird belief by physicians that real connective tissue problems are linked to psychosomatic symptoms.

 

I'm always pleased to see scientists operate with open minds.