[POTS]: State of the science and clinical care from a 2019 [NIH] Expert Consensus Meeting, 2021

(Very unsure where to put this, not quite guidelines, related to ME, but not research either)
(Also unsure why it took 2 years to publish this but it's new)

Part 1 of 2 (according to this tweet).

https://www.sciencedirect.com/science/article/pii/S1566070221000588


Abstract

Postural orthostatic tachycardia syndrome (POTS) is a chronic and often disabling disorder characterized by orthostatic intolerance with excessive heart rate increase without hypotension during upright posture. Patients often experience a constellation of other typical symptoms including fatigue, exercise intolerance and gastrointestinal distress. A typical patient with POTS is a female of child-bearing age, who often first displays symptoms in adolescence. The onset of POTS may be precipitated by immunological stressors such as a viral infection. A variety of pathophysiologies are involved in the abnormal postural tachycardia response; however, the pathophysiology of the syndrome is incompletely understood and undoubtedly multifaceted.

Clinicians and researchers focused on POTS convened at the National Institutes of Health in July 2019 to discuss the current state of understanding of the pathophysiology of POTS and to identify priorities for POTS research. This article, the first of two articles summarizing the information discussed at this meeting, summarizes the current understanding of this disorder and best practices for clinical care.

The evaluation of a patient with suspected POTS should seek to establish the diagnosis, identify co-morbid conditions, and exclude conditions that could cause or mimic the syndrome. Once diagnosed, management typically begins with patient education and non-pharmacologic treatment options. Various medications are often used to address specific symptoms, but there are currently no FDA-approved medications for the treatment of POTS, and evidence for many of the medications used to treat POTS is not robust.

 

2 years to publication does seem like a lengthy delay but it may be NIH related. I say that because don't think there have been any articles published about the NIH Common Data Elements for ME/CFS and that project predates this POTS workshop. So I wonder if the NIH connection has something to do with the delay.

 

Haven't read all the article yet, but the estimate of 1 to 3 million US citizens affected has me wondering why this condition has been so neglected. The potential number with this disorder certainly has an effect on the economy, a viewpoint that seems to interest governments. Although one has to wonder. There is government inertia on so many issues.

There is of course a gender bias issue here. We know NIH spends less on diseases that more frequently effect females. Perhaps, or even likely the same in other countries.

At any rate, it's good to see some attention being paid to this. It also throws a bit if hope our way.

 

In the UK Professor White in 2014 knew about POTS but dismissed it and that has been the general rule. My son was diagnosed with POTS in 2016 and ever since they have been trying to take the diagnosis away.

You have to wonder why they do not do a simple stand test and look at the patients lived experience of wearing devices that are hospital standard? the truth - they do not want this found. POTS has been linked to post viral since the 1800

of the 14 new expansive centers commissioned for long covid children the same people doing the same treatment. NICE actively encouraged centers and have not changed the advice and we all knew who would be getting the money Professor Crawley. so we are backed to square 1 CBT and GET regardless of the harm. Unless these Drs are held to account for the damage they have done things will never change.

Look at who is heading the teams New specialist service for children with long Covid | CUH
There are no POTS EDS Mast cell histamine or autoimmune specialists so no understanding

PEM has elements of mast cell/histamine intolerance, re awakening of viral activity, EDS or hEDS and connective tissues disturbance and fluctuations, POTS and autoimmune and lack of vitamin such as b and d then you have calcium channels and magnesium.

PEM causes gut issues, cytokine storms and PEM comes from thinking and lack of ability to sleep circadian rhythm. Who is looking at this 0

I have just received my son's new booklet from East Coast CFS as he transitions from paediatric to adult services. There is nothing about what I have mentioned above and it is truly shameful because the lived experience has been glossed over so we never learn.

NICE are just playing with us when they say they are looking for answers. If the same people are involved with these centers that do not report the harms on their ME patients then why would they with Covid. Look at the money they are going to have. They do not and will not care what they do unless they are held to account and the lived experience is not researched.

 

Perhaps a tangent, but the things I wished I had been told about early on in my ME, and which getting on top of actually makes a difference to my everyday life, are PEM, orthostatic intolerances and food intolerances.

 

Have you ever had a test for histamine? This is a simple test of urine, it is a NHS test. The other factor her is the research into Parasite and virus. So if all ME patients were tested for these we could then see which impacts on the patient and which combination has the most impact. Then we could track down after in a PEM state and when the impact of those made a difference to connective tissue etc, we know it impacts but not sure how much or why and we should by now this is where the research should be heading.

They should have 3 cohorts when studding as they also see the difference between

1) those that recover what happens to their body's systems.
2) Those that have the symptoms for 12 months but gradually get better.
2) Those that stay the same or gradually decline.

Looking for differences in these groups will give us clues to what is going wrong and possibly why. PEM in each case should be recognised and how the body reacts to rest or activity.