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

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The bad comments in the comment section reflects general ignorance, compounded by outdated Victorian era ideas. Or Trolls, to put it more bluntly, typically male Trolls. Some people don't seem to care about speaking out about things that they know nothing about - indeed it seems they revel in their ignorance.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
The comment section is horrendous.

I'd rather someone made a comment that was clearly horrendous and therefore made it clear that there's something badly wrong with themselves and their attitudes than that they went halfway, actually! At least in the former case they take the rope and hang themselves and people can see them for what they are: trolls.

I think the best way to deal with them is simply to ignore them and post calm, dignified, informed and rational messages. The sheer weight of that, when it happens, gives an overwhelmingly positive impression of our community.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
BTW, the article is primarily about POTS - there's virtually no mention of ME except that it's one of several conditions sometimes mistaken for it.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Third of ME cases 'wrongly diagnosed': Experts says thousands thought to have chronic fatigue actually have similar condition that can be treated

  • ME affects around 250,000 people in the UK and is difficult to diagnose
  • Symptoms can include tiredness, mood swings and memory problems
  • Many people could in fact be suffering from postural tachycardia syndrome
  • This condition can be treated with medications and lifestyle changes help too

Doctors could be misdiagnosing up to a third of suspected cases of ME.

Professor Julia Newton said many of those thought to be suffering from chronic fatigue are in fact suffering from postural tachycardia syndrome or PoTS.

Unlike ME, this condition can be treated with a variety of medications and doctors suggest lifestyle changes can help as well.

ME, which affects around 250,000 people in the UK, has long proved difficult for doctors to diagnose.

In the absence of a reliable clinical test, they often rely on detecting symptoms such as tiredness, mood swings and memory problems.

But Professor Newton, from Newcastle University’s institute for ageing and health, said around 80,000 ME sufferers may have PoTS.

Around 110,000 people are thought to be affected by PoTS, which involves an abnormality in the nervous system. Also difficult to diagnose, it can be treated with a range of medication including beta blockers.

‘I would think that around one third of people with chronic fatigue syndrome, if they were properly tested, would have PoTs,’ Professor Newton told the Telegraph [see HERE]...

Because it is so difficult to diagnose, doctors usually classify it as sudden tiredness lasting more than six months that is not explained by another illness, exercise or hard work.

Previous studies have suggested that three quarters of ME sufferers have lost their job because of the condition and 2 per cent cannot leave their homes.

Sonya Chowdhury, chief executive of the charity Action for ME, told the Mail last night: ‘The findings are really interesting. We know that misdiagnosis is a big issue and are aware of the association with PoTS.

‘GPs and other healthcare professionals regularly tell us about the difficulty in they have in diagnosing ME and the need for much more research into and education about the nature of ME.’

As there is no cure for ME, patients are given treatments including painkillers for muscle ache and behavioural therapy and exercise therapy.

They are often advised to avoid alcohol, caffeine, sugar and sweeteners in case they make their symptoms worse.

Last year former EastEnders actress and Love Actually star Martine McCutcheon, 38, told about the seven years of her life she has lost to the illness.

Read more: http://www.dailymail.co.uk/health/a...tigue-actually-similar-condition-treated.html
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Have to admit that I've mixed views on this.

If it was a simple matter of misdiagnosis then of course its a good thing that 30% of patients could be pulled out of the CFS wastebasket but surely (if I recall correctly) Newton previously reported much higher rates of autonomic dysfunction in ME/CFS patients (as have other researchers - in some cases 100%).

As I understand it POTS is one particular 'flavour' of dysautonomia - so what are we saying? Is autonomic dysfunction a feature of ME/CFS or not or is it just the case that 'POTS' is a treatable form. Does identification of POTS then exclude a diagnosis of ME/CFS or not? Does not finding POTS in ME/CFS patients then preclude considering other forms of autonomic dysfunction?

I'm confused!
 

ukxmrv

Senior Member
Messages
4,413
Location
London
The first I heard of POTs/ NMH in CFS was the Rowe paper in 1995. My private non-NHS ME doctor started testing his existing patients with the "poor mans tilt table test" and found that many of us had something along those lines. However he didn't prescribe any meds, just increased salt and fluids.

The dis-credited NHS Cardilogist Dr Nixon (who I was at Charing X Hospital) claimed that hyperventilation was the cause of fainting and BP problems in PWME. Even after he was discredited this belief still seemed to influence NHS Cardiac specialists.

In the UK the POTs/NMH was never mentioned at any NHS Clinic that I attended or by any NHS doctor. Even the "Fatigue" clinic which is part of St Mary's does not refer patients to their POTS Consultant even if there are indications that this could be relevant.

https://www.uclh.nhs.uk/OurServices/Consultants/Pages/ProfChristopherMathias.aspx

Here's a link to a presentation that mentions this NHS team on one slide under "Causes and assocations of POTs) CFS is there (along with but separate from panic attacks and deconditioning)

http://www.stars.org.uk/files/file/...nt - STARS Patients - 1030 - Prof Mathias.pdf

One of the questions I've been asking for a while now is why POTS has not been taken into consideration with CFS in London when the NHS in London has expertise for a number of years now?
 
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Sidereal

Senior Member
Messages
4,856
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.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
BMJ Open 2014;4:e004127 doi:10.1136/bmjopen-2013-004127
  • Cardiovascular medicine
Postural tachycardia syndrome is associated with significant symptoms and functional impairment predominantly affecting young women: a UK perspective

Claire McDonald1, Sharon Koshi1, Lorna Busner2, Lesley Kavi2, Julia L Newton1

Correspondence to Professor Julia L Newton; J.L.newton@NCL.AC.UK
  • Received 27 September 2013
  • Accepted 11 October 2013
  • Published 16 June 2014

Abstract

Objective


To examine a large UK cohort of patients with postural tachycardia syndrome (PoTS), to compare demographic characteristics, symptoms and treatment of PoTS at one centre compared to the largest patient group PoTS UK and to verify if their functional limitation is similar to patients with chronic fatigue syndrome (CFS).

Design

A cross-sectional study assessed the frequency of symptoms and their associated variables.

Patients and setting

Two PoTS cohorts were: (1) recruited via PoTS UK, (2) diagnosed at Newcastle Hospitals National Health Service (NHS) Foundation Trust 2009–2012.

Patients with PoTS were then compared to a matched cohort with CFS.

Main outcome measures

Patients’ detailed demographics, time to diagnosis, education, disability, medications, comorbidity and precipitants.

Symptom assessment tools captured, Fatigue Impact Scale, Epworth Sleepiness Scale, Orthostatic Grading Scale (OGS), Hospital Anxiety and Depression Scale, Health Assessment Questionnaire, Cognitive Failures Questionnaire.

Results

136 patients with PoTS participated (84 members of PoTS UK (170 cohort; 50% return) and 52 (87 cohort; 60%) from Newcastle Clinics).

The PoTS UK population was significantly younger than the clinic patients, with significantly fewer men (p=0.005).

Over 60% had a university or postgraduate degree. Significantly more of the PoTS UK cohort were working, with hours worked being significantly higher (p=0.001).

Time to diagnosis was significantly longer in the PoTS UK cohort (p=0.04).

Symptom severity was comparable between cohorts. The PoTS total group was compared with a matched CFS cohort; despite comparable levels of fatigue and sleepiness, autonomic symptom burden (OGS) was statistically significantly higher.


The most common treatment regime included β-blockers. Overall, 21 treatment combinations were described. Up to 1/3 were taking no treatment.


Conclusions

Patients with PoTS are predominantly women, young, well educated and have significant and debilitating symptoms that impact significantly on quality of life.

Despite this, there is no consistent treatment.


Full paper follows: http://bmjopen.bmj.com/content/4/6/e004127.full

This is the paper that is referred to on the front page of today's:

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

and
Daily Mail: http://forums.phoenixrising.me/inde...ongly-diagnosed-experts-says-thousands.30901/

and
Independent: http://www.independent.co.uk/life-s...ting-mostly-educated-young-women-9541644.html
 
Messages
15,786
Newton previously reported much higher rates of autonomic dysfunction in ME/CFS patients (as have other researchers - in some cases 100%).
Nearly all ME patients have orthostatic autonomic dysfunction, but a relatively small minority have tachycardia. Most have hypotension or narrow pulse pressure instead (though tachycardia can then occur to help compensate for reduced circulation).
 

ukxmrv

Senior Member
Messages
4,413
Location
London
A basic POTS examination is included on the Scots "Good practise statement for CFS/ME" 2010

""Erect+supine blood pressure and pulse rate (to exclude significant postural
hypotension which can resemble some of the symptoms of ME‐CFS or be a sign of
Addison’s. An increase in heart rate of over 30 bpm on standing may suggest
Postural Orthostatic Tachycardia Syndrome (POTS), a recognised co‐morbid finding
in ME‐CFS ‐ consider cardiology referral for further assessment); ""

http://www.show.scot.nhs.uk/App_Shared/docs/ClinicalGuide.pdf

The UK NICE 2007 Guideline says

1.2.2.6 The following tests should not be done routinely to aid diagnosis:
the head-up tilt test
auditory brainstem responses
electrodermal conductivity.

(There were earlier mentions by NICE of research into using treatments by Rowe for NMH though but these were disgarded)
 
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Legendrew

Senior Member
Messages
541
Location
UK
The comments on these articles always makes me cringe, it always devolves into the ME or CFS argument. POTS and dysautonomia is such a poorly understood but rapidly advancing area that it's very difficult to distinguish one condition from another and then there's the, as of yet, impossible question of whether a patient has POTS by itself or has POTS in conjunction with ME/CFS which appears to be a common thing. Without any ME/CFS test of course we don't have any idea. I don't really even feel I'm able to speculate too much on this, I can say that I suspect I've experienced a POTS like illness myself but whether that is alone or with ME/CFS or something else entirely is a question I try not to dwell on given that I'm likely to never know.