POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

[ukxmrv]

Doesn't it boil down to explaining all of the person's CFS symptoms by the new diagnosis of POTs? It's co-morbid if there are still symptoms that the person has that meet a CFS dx and these cannot be explained by POTS/NMH etc.

 

[ukxmrv]

The Independent is a separate UK newspaper from the Guardian. I think that the editor of the Independant has an interest in CFS and ME.

 

[taniaaust1]

Indeed. And it might help persuade e.g. NICE to add POTS as an exclusion pre-diagnosis of ME.

I personally do not think that it could be used as a exclusion diagnoses of ME. Doing that would be like deciding that all those with FM would be excluded from having ME but clearly many people actually have both. This same goes for POTS and ME.

My ME affects my POTS and my POTS can affect my ME but I can clearly feel them as two different things. One could fix my POTS but Im still going to have ME. That would just mean my ME has a chance to flare up more as right now having the POTS adds a protective mechanism (its hard to overdo when you cant even stand up for long! So it prevents pain for me etc etc).

What they do need to do and should be doing is subgroup ME (well at least till more is known about this disorder). The EDS group is yet another subgroup which should be for the ME group. As studies should be looking at the subgroups, I think that is the only way things will far easier stand out for each group which is manfesting in major different ways, maybe the different groups are even manifesting in different ways in many test results.

 

[ukxmrv]

NICE needs to include an exclusion of POTS if it explains ALL of the symptoms that a patient is experiencing though?

In the video Julia Newton did for Scots doctors she described "CFS" patients being given a Tilt Table test and telling her that the symptoms they experienced there were their "CFS" ones.

There could be a misunderstanding going on of course.

NICE at least needs to include information for doctors on how to exclude POTS/NMH only patients from a CFS diagnosis. At the moment no CFS clinic in England that I know of (apart from patients sent maybe to Julia Newton's area) measures the HR/BP lying down and standing up as part of their physical examination. I don't know of any GP who does that. Some UK CFS clinics don't do any sort of physical examination of their patients at all and some don't even have a doctor that sees patients. The patient arrives and sees a nurse or a psychologist and is put into CBT or GET and told that there is nothing more to be done for them.

The UK NICE guideline is very lacking in listing conditions to exclude and tests to carry out. It's one of the reasons why patients fought against them.

 

[Esther12]

Some of the comments under the news articles are pretty hostile.

 

[manna]

Surely its possible to have both?

 

[Valentijn]

If PEM is taken into account, and differentiated from exercise intolerance, it should be fairly clear if the patient has ME, OI, or both. The problem is that PEM isn't really acknowledged as a symptom in the UK, much less a central or required symptom of an ME diagnosis. The CFS definition being used is broad enough that OI qualifies as CFS there, especially since they typically won't order the tests to exclude OI (or much of anything else) once CFS is diagnosed.

They badly need to clean up their ME/CFS criteria and end the absurdity.

 

[bertiedog]

Surely its possible to have both?

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.

At least it has to be a positive that Julia Newton is talking about our condition and the big problems untreated POTS can cause although I wish she wouldn't just talk about CFS or is she doing this on purpose, knowing that true ME is likely to be something different again?

Pam

 

[alex3619]

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.

 

[Valentijn]

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.

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.

 

[manna]

Because the heart rate rises they assume its to do with that organ. Its more to do with blood quality and consistency. Its the blood that allows the heart to pump correctly.

 

[Gingergrrl]

I definitely have both POTS and CFS and know they are related just not sure how. When I stood up from bed this morning my HR was 154. I took the beta blocker, 1/2 Florinef and almost full bottle of water and now propping up my feet as my cardiologist recommended.

Here in the U.S. I have found many doctors who treat POTS but no one who links it to CFS. And if they do believe there is a link, they do not know how to connect it and it does not change their treatment.

ETA: I wanted to clarify when I said link that I meant a correlation or subset and not that POTS is the cause or entirety of CFS!

I am not familiar w/ the NICE guidelines and is that specific for how the UK treats CFS or all illnesses?

 

[Tom Kindlon]

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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"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.

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That study didn't find that these people didn't have CFS and just had POTS. One can have both.

 

[Firestormm]

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:
-------


-------
That study didn't find that these people didn't have CFS and just had POTS. One can have both.

I read it as well - and then had to sleep. It was interesting to note that the paper edition of the Daily Telegraph was titled, 'A third of ME patients could be treated', and then when it was posted online, the headline became, 'ME: One third of patients 'wrongly diagnosed'' with the byline: 'A third of patients with Chronic Fatigue Syndrome, or ME, may be suffering from a treatable illness known as PoTS, a professor claims'.

http://forums.phoenixrising.me/inde...ia-newton-front-page.30892/page-2#post-473081

 

[SOC]

MODERATOR'S NOTE: Multiple threads on popular press articles about this paper have been merged into this thread--hence the title has been changed from the original

POTS is associated with significant symptoms and functional impairment...

.

 

[Bob]

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).

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.

 

[Firestormm]

From Facebook:

https://www.facebook.com/permalink....67358159&id=526359017390431&notif_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.

 

[Firestormm]

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.

This was the press release attached to the research and from BMJ: http://bmjopen.bmj.com/content/supp...127.DC1/bmjopen-2013-004127_Press_release.pdf

 

[manna]

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.

so if you test positive for pots, you don't have mecfs?

 

[SOC]

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.

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.

It's not clear to me yet whether Dr Newton is suggesting that a third of patients diagnosed with cfs/me are misdiagnosed primary POTS patients or whether a third of patients have comorbid POTS. My guess would be that far more than a third of ME/CFS patients have comorbid OI of some type. I would not be at all surprised if a third of people diagnosed with cfs/me are actually primary POTS patients.