ME Association funds development of new protocol for Dysautomnia

https://meassociation.org.uk/2024/06/me-association-professor-manoj-sivan-to-develop-new-protocol-for-dysautonomia-in-me-cfs-and-long-

sorry Dont know how to copy the text

 

Does not look like a very useful design, at first glance.

 

His comments in a letter to the BMJ in 2020 on the LC NICE GDL include some good comments:
"The guidance mentions screening blood tests (such as full blood count; clotting profile; renal, liver, and thyroid functions; and C reactive protein) and tests of both cardiac and lung function to capture reversible abnormalities, but it lacks detail on the management of serious life threatening complications such as a hypercoagulable state.10 The next update should prioritise how to screen for, diagnose, and manage medical complications11 reported in patients with long covid including silent desaturations; cardiac, respiratory, renal, hepatic, gastrointestinal, and neurological abnormalities; endocrine problems; autonomic dysregulation and postural tachycardia; and mast cell disorder. Missing these complications could result in serious adverse outcomes for patients."
https://www.bmj.com/content/371/bmj.m4938.short

 

Dysautonomia in its classical sense is not just a clinical syndrome. POTS is meant to be diagnosed based on subjective and objective features but there remain questions as to the relevance of the objective measures being used. And the "30-100%" estimate just tells you that we have no reliable prevalence data. The sequential intervention design introduces the potential for confounding carry-over effects. There's no mention of blinding for the pharmacological interventions. It's an 8 week trial with no mention of longer-term or post-intervention follow-up. Personalisation isn't explained in the linked document & may limit the generalisability of any findings. And an open question as to whether abnormal lean & active-stand tests do indeed constitute "objective evidence of dysautonomia".

I hadn't come across this home-based "aAP" ("adapted autonomic profile") test before - link.

I would be surprised if this tells us anything useful.

Something that reading this reminded me of: what's the evidence base look like for the common recommendation of increased salt intake in this group of patients? Perhaps useful advice for orthostatic hypotension but in POTS cohorts? The trials I've come across so far have been less than robust, and obviously high salt intake has well-known long-term risks.

Perhaps an unpopular suggestion on S4ME, but in view of the highly limited evidence base, perhaps the term "dysautonomia" should be left for PAF, Shy-Drager, etc?

 

That sentence to me is unimpressive. The way to screen for these is already established. What exactly is being said here? I fear it is 'Why don't we measure everything we can charge a fee for measuring? Send them along'.

 

That would be my thought. As far as I can see 'POT' is not dysautonomia (almost the opposite) because it is a sign of a competent autonomic response to a haemodynamic stress. I have not yet seen any evidence of dysautonomia in ME/CFS or LC. Unusual autonomic activity maybe, but that may have many origins.

 

I’m not a scientist but I’m learning. Not sure where the blame lies here, but the headline on this story made me feel something was off, hence I posted here.

So, dysautonomia is usually an umbrella term for some kind of issue with the autonomic nervous system (Google tells me) occurs in a number of illnesses and diseases and the most common is POTS (thank you Wikipedia) https://en.wikipedia.org/wiki/Dysautonomia

So as a general citizen, I’d think - oh good, POTSand OI are a problem in ME/CFS and probably LC, yes dysautonomia should be looked at, it’s good the MEA are funding this.

Now, as a cynical, more educated S4ME member, I’m thinking this sounds a bit 6th form A-Level science project. Surely there’s a wealth of existing research in POTS/OI (which are distinct, and only two of the items under the large dysautonomia umbrella) given that the issues also arise in such well-studied diseases as Parkinson’s, HIV, eDS, Dementia with lewy bodies.

I don’t know if they’ve “dumbed down” the language for the press release?

 

It’s talking about leading to a bigger NIHR study 25/26. I think there’s little there that could not have been done ten / twenty years ago, especially if the significant POTS component /co morbidity with ME Had been more Acknowledged .The “let’s make a start in ‘24” shows the dearth of genuine commitment to managing the field In any medical Way vs behavioral management of fatigue before. If the interest wasn’t there, which it probably was because Julia newton was keen to do research but said she’d been limited by funding (&was bizarrely funded by afme to study effects of drinking more water or something) , it could have been included in a ring-fenced funding call to stimulate it, as long covid.

 

It used to be that Orthostatic Intolerance (OI) was an umbrella term that covered several different diagnoses, including POTS, NMH, and others. So at least at one time POTS was considered one type of OI.

But autonomic specialists often don't agree on this terminology. Plus I think it has changed over the past 20 years.

I have no particular attachment to any particular terms! But I do wish there was more agreement and better definitions so it would not be so confusing.

 

I think what irked me was the sentence in bold at the start of the press release “…managing dysautonomia POTS (Postural Orthostatic Tachycardia Syndrome and OI Orthostatic Intolerance)…” reads as if dysautonomia is just POTS and OI, and from then on it’s as if dysautonomia can be used interchangeably to represent POTS/OI. Whearas POTS and OI are both distinct and not the full range of dysautonomia types.

I note the study outline doesn’t refer to OI, but OH (orthostatic hypotension)