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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Indeed. And it might help persuade e.g. NICE to add POTS as an exclusion pre-diagnosis of ME.
Well I definitely have both, as well as adrenal insufficiency and hypothyroidism! As mentioned previously I can control the POTS quite easily with low dose betablockers and extra salt or occasional fludrocortisone but none of this has helped with the ability to crash quite easily or to stop me from catching frequent infections. The treatment hasn't stopped the frequent migraines either so those of us with true ME/CFS have something else going on for sure and they need to get to the bottom of this for us to stand a chance of being well.Surely its possible to have both?
I seriously doubt it. From what I hear, they get the immediate reaction during and right after upright exertion, but nothing similar to PEM. They also avoid symptoms by exercising lying down.What I want to know most is if POTS patients without clear ME also have post exertional malaise as measured by the 2 day CPET. They might.
"It is becoming increasingly clear that historically many patients with PoTS were given a diagnosis of CFS/ME. A recent cross-sectional study performed by us has confirmed that 27% of those with a diagnosis of CFS have PoTS.27"
Hoad A, Spickett G, Elliott J, et al. Postural orthostatic tachycardia syndrome is an under-recognized condition in chronic fatigue syndrome. QJM 2008;101:961–5.
I read this paper. Nowhere does it say/prove that people with POTS have been misdiagnosed with CFS (as suggested in some of the media coverage).
The only real data that is close to the newspaper headlines that 1/3 with CFS really have POTS is this statement on an old study:
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That study didn't find that these people didn't have CFS and just had POTS. One can have both.
.POTS is associated with significant symptoms and functional impairment...
I've been wondering if the press had slightly misrepresented the situation.I read this paper. Nowhere does it say/prove that people with POTS have been misdiagnosed with CFS (as suggested in some of the media coverage).
https://www.facebook.com/permalink....67358159&id=526359017390431¬if_t=notify_me
ME / CFS Research Newcastle
15 mins ·
The press release is available on the BMJ open website together with the PDF of the whole article. The paper is a report of a survey from our specialist clinic and the patient support group - so as you correctly point out - it's not necessarily a representative sample but what it does illustrate (and remember there has never been a survey of the symptoms that affect patients with pots in the uk) is that it is a condition that is associated with fatigue and a lot of symptoms that are similar to CFS - hence our suggestion that it is an important thing to look for in people with me/CFS because it might respond to different treatment. It isn't the explanation for all ME - but unless we look for it, we might miss a proportion of those in the clinic who are diagnosed with CFS or ME but in fact have PoTS.
I've been wondering if the press had slightly misrepresented the situation.
Like Firestormm, I read the abstract late last night, and then promptly fell asleep and forgot what I read.
but unless we look for it, we might miss a proportion of those in the clinic who are diagnosed with CFS or ME but in fact have PoTS.
I think it's a question of correct exclusion. Patients who are treated for POTS and then have no ME-like symptoms remaining are not, and probably never were, ME patients. They are primary POTS patients. Patients who are treated for POTS and have an improvement in some symptoms but still have ME symptoms (most notably PEM) have ME with comorbid POTS. Exclusionary conditions are only exclusionary if treatment relieves all symptoms. Otherwise the conditions are comorbid.My view is that dysautonomia/OI/POTS/NMH are symptoms, not diseases per se. POTS can occur in ME, Ehlers-Danlos syndrome, Sjogren's syndrome, multiple sclerosis, Lyme disease etc. etc. Why would a diagnosis of POTS somehow mean you've been misdiagnosed with ME? No one would claim that a person with a recognised connective tissue disorder who also happens to have POTS is "wrongly diagnosed" with the former.