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

Discussion in 'Latest ME/CFS Research' started by Firestormm, Jun 16, 2014.

  1. Firestormm

    Firestormm Guest

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    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.)
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  2. Bob

    Bob

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  3. Firestormm

    Firestormm Guest

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    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.
    Sasha likes this.
  4. Bob

    Bob

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    I've read the article, but I don't have a link.
    It suggests that a third of patients diagnosed with ME actually have POTS.
    And it links to a research paper. I'm not sure if the research paper is new.
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  5. Bob

    Bob

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    The Telegraph often seems to delay putting health stories on the website. Perhaps to make people run down to the shops to buy a paper? It'll go online after a short while.
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  6. Firestormm

    Firestormm Guest

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    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 ;)
  7. Gingergrrl

    Gingergrrl Senior Member

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    @Firestormm Wow, please update us once you are able to read the article. I am very curious what it will say?!
    Firestormm likes this.
  8. Bob

    Bob

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    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
  9. Firestormm

    Firestormm Guest

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    This just on my alerts, Bob:

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  10. Firestormm

    Firestormm Guest

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    The article has been transcribed on mecfsforums by Patricia:

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

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  11. SOC

    SOC Moderator and Senior Member

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    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.
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  12. Allyson

    Allyson *****

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  13. Firestormm

    Firestormm Guest

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    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 :)
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  14. Valentijn

    Valentijn Activity Level: 3

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  15. Gingergrrl

    Gingergrrl Senior Member

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    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
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  16. Valentijn

    Valentijn Activity Level: 3

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    The article is too short to be bad, but they come across as pretty clueless in general.
    Sidereal likes this.
  17. SilverbladeTE

    SilverbladeTE Senior Member

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    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: Jun 17, 2014
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  18. bertiedog

    bertiedog Senior Member

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    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
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  19. Sasha

    Sasha Fine, thank you

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    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/
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  20. Sasha

    Sasha Fine, thank you

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    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.
    kevinj, maryb and justy like this.

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