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

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Daily Telegraph 17 June 2014

'A third of ME patients could be treated'


A massive thanks to @Bob for spotting this one so soon and before editions hit the shops. I will definitely be making the trip to grab a copy as soon as I can :)

Never thought I'd see the day when a non-sensational* ME headline hits the front page of a serious newspaper!

All we have thus far is this image from Twitter I am afraid. I'll populate as soon as possible (or others can if they get there first - or are better able than me):

https://mobile.twitter.com/politicshome/status/478656080026038273

It's to the right of the main photo of the Royals :)

Well done Professor Newton! :balloons::balloons:

(*non-sensational because it's Julia Newton who I respect a great deal, though of course I don't know the content of it yet.)
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Russ, I've found a better quality image.
But unfortunately the full text is still not readable:
https://mobile.twitter.com/Telegraph/status/478639950112763904

Thanks.

I still can't read it but I think the last sentence says 'findings will be are reported in....' somewhere... So is this new research? Hmm... I think I shall still grab a paper version from the vendor down the road.

They must have different paper content to online content - shame really as for this story most people will want to read it online I suspect.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I've read the article, but I don't have a link.
It suggests that a third of patients disposed with ME actually have POTS.
And it links to a research paper. I'm not sure if the research paper is new.

Well I bet Tony from the MEA will be posting as soon as he possibly can - unless its online before then in full. I am a tad reluctant to reproduce straight to forum without a direct link. See what occurs later maybe? Perhaps we/you can track down the paper as well ;)
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I'm pretty sure it relates to this research paper published 16th June:

Postural tachycardia syndrome is associated with significant symptoms and functional impairment predominantly affecting young women: a UK perspective
http://bmjopen.bmj.com/content/4/6/e004127.abstract


This just on my alerts, Bob:

Science Codex
16 June 2014
Poorly understood postural syndrome blights lives of young well educated women

...In the US, PoTS is thought to affect around 170 per 100,000 of the population, one in four of whom is disabled and unable to work.

But the symptoms, and their impact, are frequently not recognised in the UK, or attributed to anxiety, panic disorder, or chronic fatigue syndrome (CFS), say the researchers, who wanted to find out if PoTS affects particular groups, and how.

They therefore assessed 84 members of the national charity and support group, PoTS UK, and 52 patients diagnosed with the syndrome at the NHS falls and syncope clinic in Newcastle, north east England, between 2009 and 2012.

All participants completed a validated set of questionnaires specifically aimed at gauging levels of fatigue; sleepiness; orthostatic intolerance; anxiety and depression; ability to carry out routine tasks; and brain power.

The profile of the two groups was broadly similar, and indicated that people with PoTS are predominantly young - average age of diagnosis 30-33 - well educated to degree or postgraduate degree level, and female.

Poor health had prompted a significant number to change their jobs or give up working altogether, and both groups experienced high levels of fatigue, daytime sleepiness, orthostatic symptoms, anxiety and depression, memory and concentration problems, and considerable difficulty carrying out routine tasks.

Around one in five people had been diagnosed with CFS and a similar proportion had Ehlers-Danlos syndrome (inherited connective tissue disorders), suggesting that there may be an underlying overlapping cause, say the researchers.

Beta blocker drugs, which regulate heart rate, were the most common treatment for PoTS. But altogether, patients reported taking 21 different combinations of drugs. And a significant number were taking nothing at all or just salt.

"Patients with PoTS ... have significant and debilitating symptoms that impact significantly on their quality of life," write the researchers. "Despite this, there is no consistent treatment, high levels of disability, and associated comorbidity."

They go on to emphasise that their findings indicate that patients with PoTS experience a similar level of disability to people with CFS, but yet don't receive the same protection in law. "Our experience suggests that some patients never recover, and that a subset will worsen over time," they conclude.

Source: BMJ-British Medical Journal [http://bmjopen.bmj.com/content/4/6/e004127.abstract]


Read more: http://www.sciencecodex.com/poorly_...hts_lives_of_young_well_educated_women-135764
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
The article has been transcribed on mecfsforums by Patricia:

Link: http://www.mecfsforums.com/index.php?topic=20453.msg162777;topicseen#msg162777

If you are unable to read the article above, here is what it says:

A third of ME patients could be treated

By Sarah Knapton
Science Correspondent

A THIRD of the people who believe they have Chronic Fatigue Syndrome, or ME, may be suffering from a treatable illness, a professor claims.

There is currently no medication for ME, which is characterized by fatigue, muscle aches and memory loss.

However, Prof. Julia Newton, of the Institute for Ageing and Health at Newcastle University, believes that doctors often wrongly diagnose ME when people are suffering from Postural tachycardia syndrome (PoTS).

PoTS is a disorder of the nervous system that disrupts the body’s automatic functions, wuch as breathing.

Symptoms include dizziness, rapid heartbeat, fainting, nausea, excessive tiredness and trembling. Young women are most likely to be affected by the ailment, which afflicts about 110,000 people in Britain.

It can be treated with beta-blockers and lifestyle changes. However, few doctors have ever heard of it.

Prof Newton says about 80,000 of the 250,000 ME suffers may have the condition. “I would think that around one third of the people with chronic fatigue syndrome, if they were properly tested, woud have PoTS,” she said.

“PoTS is an abnormal response of the nervous system, but it is a spectrum, so some people will feel dizzy on standing, while others will actually black out. It affects the part of the nervous system which is outside our control.”

Although doctors are unclear as to what causes the problem Prof Newton believes it may be caused by a viral infection or hormonal changes.

Prof Newton’s tem studied 54 members of a national charity and support group PoTS UK and a further 52 patients who had been diagnosed at an NHS falls clinic in Newcastle between 2009 and 2012.

The participants completed questionnaires to gauge levels of fatigue; anxiety and depression; ability to carry out tasks; and mental power.

It was found that people with PoTS were predominantly young, well-educated and female.
Prof Newton said: “Our experience suggests that some patients never recover.”

The findings were reported in the online journal BMJ Open.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
So this is about misdiagnosis. That's important. It brings up the critical need to properly test rather than diagnose "CFS/ME" without any evidence and then deny testing and treatment.

Indeed. And it might help persuade e.g. NICE to add POTS as an exclusion pre-diagnosis of ME. Also it will help raise the awareness of POTS and hopefully increase the chance for some people to receive treatment and recognition for their problem.

However, there will be/there are people who believe they have POTS and ME or that POTS is part of ME... But I think it does help to identify those who can receive an alternate diagnosis - when testing is available or the symptoms are evident - and more especially when treatment is available that can help.

Not that I know a lot about POTS I must admit. My own experience with dizziness and nausea and disequilibrium appeared to have centered around the labyrinthine system - which was largely treated.

Anyway... all good stuff and front page news no less. Congratulations to Professor Newton and much thanks from me :)
 

Gingergrrl

Senior Member
Messages
16,171
This is very interesting as I have CFS and have OI and many POTS type symptoms although still unclear if I have a true diagnosis of POTS. My endo and cardiologist gave me Florinef for the POTS/IST symptoms and said it is all on the same continuum of dysautonomia.

I believe that POTS is a part of CFS for many sufferers (but not for others.) I did not have any POTS symptoms prior to developing CFS following mono/EBV. I would hope that the article does not simply dismiss CFS as "misdiagnosed POTS" but rather explains that autonomic dysfunction such as POTS can be a big part for many CFS sufferers and can also be an independent diagnosis for non-CFS sufferers.

True, well-written education about this could be great, so I will try to be hopeful that it is an objective and fair article... maybe ???o_O
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
We do not know what ME is, this is crucial and massive problem
I think POTS is part of what many ME patients have
But ME itself may well be a group of illnesses that all provoke:

~Similar and wrong responses from our immune systems because of similarity in how the body considers them a "threat". For example, several virus types may all provoke the body to react to them in way similar to how we experience Flu infections. The original pathogen's effects providing variation in the actual experience and health problems. So you could have Lyme Disease or Mycoplasmas both provoking ME-like effects on top of the effects the pathogen itself has!

~Or from parts of the immune systems that get damaged and cause them to malfunction and thus in similar symptoms as they are essential parts of our bodies and so these parts are a like to all of us,

~Or from similar damage and effects to other parts of the body and thus body as a whole caused by initial infection or poison causing permanent damage.
Yu maybe poisoned by pesticide or a virus hat gets into the nervous system, in either case, both may damage crucial systems or parts of the brains tem, as a possibility.

~Or mix of the above! The possible combinations are incredibly enormous and complex.



please forgive the emphasis, it is I think, important.
it is like we are dealing with cancer, cancer is NOT a "single" thing, though it's general obvious effect is much alike
The deeper causes, influences and variations though are likely to be extremely complex

Or like how several poisons can all cause similar symptoms but be different, for example, strychnine and Sarin.

Example:
We may well find a widely common group of viruses across the world set us up for ME by provoking or damaging the immune systems, but only in people who's genetics predispose them to this, AND must also suffer some other issue that is the final trigger, such as a severe infection of specific type, or poison the body mistakes for the effects of a pathogen

POTS, again the true cause is not known, it affects women much more than men, well it's pretty bloody likely to be an autoimmune or hormonal linked issue then...it may well be that it is merely one subset of ME variation or that it is merely a group of patients whom that effect is more pronounced than others!

Ugh, as a rational, humane person the fact we lack basic data on which to measure and draw conclusions on this illness caused by bigotry and corruption is a crime as dark and insane the lunatic wars we keep getting dragged into over lies.
That may seem ridiculous but it is bigotry and greed that has left millions of people screwed over and dying when they shouldn't be. Every person who has suffered and died since then, well that is due to the scum responsible for bullshit, never forget it.
 
Last edited:

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
I have POTS too and it is controlled by betablockers and occasional use of Florinef plus extra sea salt in my drinks. However it has done nothing to help me be able to walk for more than 20/30 minutes at a time and I still will crash if I overdo it. Also my bp RISES with POTS not drops but that might partly be due to the fact I have adrenal insufficiency and have to take a daily dose of 6mg Prednisolone.

Previously, before taking the steroids my bp was very low and would drop on standing but this doesn't happen anymore. I still get attacks of dizziness but this is more related to severe migraine or blood sugar issues.

Therefore I think that POTS can be part of the problem for many of us, unfortunately it isn't the complete answer by any means. Still I think its great Professor Newton is doing this research and it is being reported in the Press. Hopefully she will come to realise that not everyone with ME/CFS who has POTS is cured by her treatment. That would be a real step forward.

Pam
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
This is another opportunity to recruit donors to biomedical research (like I was talking about at the w/e).

I've just tried about ten times to post the following message and it hasn't turned up yet, even though it says that the three comments shown already haven't been moderated.

If people can back me up with a short message encouraging people to donate, I'd be very grateful. We need to establish it as the social norm!

Thank you for covering this important topic. The high prevalance of POTS in people with ME has been well-known to patients and researchers for years now and yet this potentially treatable component of the disease is never tested for within the NHS, even (as far as I'm aware) within specialist ME/CFS centres apart from Professor Newton's unit at Newcastle.

High-quality biomedical research like Prof. Newton's is the only way out of the appalling medical neglect of ME patients. The article says that 2% of patients are housebound: the accepted figure is 25% housebound or bedbound and in many cases, that's for decades.

Please support biomedical research into ME. You can support individual charities that focus on biomedical research or specific projects that are crowdfunding individual studies. It's up to patients and supporters to do this: the government's track record is appalling.

Please donate to and spread the word about these research charities and projects:

http://www.meresearch.org.uk/

http://www.ukrituximabtrial.org/

http://www.microbediscovery.org/

http://cfsresearchcenter.org/
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I tried to post again, modifying the website addresses so that they wouldn't trigger a spam-catcher, but still no joy.

Will others please try to post, and push this idea of donating? These articles really are a golden opportunity to spread the word that biomedical research is going on and that patients can help fund it. Many ME patients aren't part of the community and don't know that they can help.