New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
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Mayo Clinic Minnesota and POTS

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Questus, Aug 15, 2013.

  1. Questus

    Questus Senior Member

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    Best,
    Questus
     
    Last edited: Jan 13, 2014
    Esther12 likes this.
  2. Valentijn

    Valentijn Activity Level: 3

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    Questus
    Thanks for the info. But I think most ME/CFS patients already stay far away from Mayo, due to their rather old-fashioned and idiotic beliefs about ME/CFS, and the resulting poor treatment. I'm not at all surprised to hear that their idiocy is extending in other directions as well.
     
  3. Questus

    Questus Senior Member

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    Valentjn, Mayo has published a new paper on POTS and they acknowledge CFS as a factor in the disease. They've come a long way, and they definitely recognize the connection of CFS to POTS, and site 'high viral load' as one of the reasons for the connection.

    I've been treated by Mayo for decades, and gotten exceptional care.
     
  4. OverTheHills

    OverTheHills

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    Can you supply a link to the paper please? I may need to counter Levine reconditioning in POTS type propaganda from my local hospital OTH
     
  5. Mij

    Mij Senior Member

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    Would this be
    Would this be the same as Post-Viral Dysautonomia?
     
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Perhaps it is because our medical system is being "reforemed" into a more Socialist system, so we can expect greater care like our comrades in the UK and Canada? Keep your spirits up!

    GG
     
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  7. Questus

    Questus Senior Member

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    Here is the link to the paper. It's excellent. I have extreme hyperadrenergic POTS, (NE over 1400) and MCAS. You can see in this paper that Mayo divides hyperadrenergic POTS patients into two group. Those with an NE of 600 to 999, and those with an NE over 1000. They note it's the hyper POTS patients with an NE over 1000 that tends to have MCAS as well.

    You can see them specifically reference Chronic Fatigue Syndrome, (not using the words chronic fatigue) in this paper. This is my 'go to' paper to share with doctors. I have dozens and dozens of published papers bookmarked, but I think this is the best one. It's also new and up to date.

    http://www.mayoclinicproceedings.org/article/S0025-6196(12)00896-8/fulltext

    Best,
    Questus
     
  8. Questus

    Questus Senior Member

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    There is an overlap between chronic fatigue syndrome and POTS. Patients with POTS who have chronic fatigue syndrome have higher laboratory markers of sympathetic activation than patients without chronic fatigue.43, 45
     
    Last edited: Jan 13, 2014
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  9. Valentijn

    Valentijn Activity Level: 3

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    Interesting, since very recent patient accounts still say they're trying to stick us in the psych ward :p Maybe they've got a bit an internal power struggle going on there.

    Though even in that paper, they're assuming that deconditioning is playing a role in POTS, due to POTS and deconditioning having some similar abnormalities.
     
  10. roxie60

    roxie60 Senior Member

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    Part of health providers postioning themselves for the new Obummmercare coming next year. If you are over 50 start expecting less from healthcare ( did not think we could get less but I think we are about to have an epiphany moment starting 2014).

    I am sorry to hear they are doing this to you, its not like you have a choice but they do and it doesn't fit with the do no harm mantra.
     
  11. Questus

    Questus Senior Member

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    Questus
     
    Last edited: Jan 13, 2014
  12. Questus

    Questus Senior Member

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  13. lakeshow24

    lakeshow24

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    What type of treatment for ME/CFS do they offer at Mayoclinic? Do they offer kutapressin and other things, etc?
     
  14. Gingergrrl

    Gingergrrl Community Support Volunteer

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    According to the Mayo Clinic website, they talk about CBT and GET for CFS and have absolutely nothing to offer as far as medical treatments. I have never been there myself but have heard many horror stories from patients.
     
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  15. WillowJ

    WillowJ Senior Member

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    Some of that article looks interesting,
    (I didn't realize the amount of cases associated with viral onset was this high)


    but this bit looks like the complaint we generally have about Mayo Clinic:
    bolding and paragraph breaks added.
     
    Last edited: Dec 26, 2014
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  16. WillowJ

    WillowJ Senior Member

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    They are probably also confused because diseases like POTS and ME might lead to deconditioning, but this does not mean that deconditioning is part of the pathophysiology. People in important roles do not say this about MS, for example, while some patients with MS would be similarly inactive.
     
    Last edited: Dec 26, 2014
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  17. lakeshow24

    lakeshow24

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    Thank you! My dad is a physician and only supports people who are behind a facility with other colleagues that keep each doctor in check aka great "quality controls". I disagree because I'm all about WHO gets RESULTS. I don't care if somebody is behind John's Hopkins, NIH, MASS General, Mayo Clinic, Cleveland Clinic. I care about what patients such as me say. I don't look for what one person says and take it as doctrine. I try and make sure I get as large of a sample size as possible. I plan on seeing Enlander in early January.
     
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  18. Sidereal

    Sidereal Senior Member

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    This is a re-statement of the false illness belief model of the 1980s/1990s psychiatry into more modern language of faux neuroscience. Thankfully there is virtually no evidence to suggest any of the above is true.
     
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  19. chipmunk1

    chipmunk1 Senior Member

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    Neurobabble.. this is when a drunk neurologist or a sober psychiatrist fantasizes about the cause of unexplained illnesses.
     
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  20. PennyIA

    PennyIA Senior Member

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    I've been... and they offered me a pain management clinic that nearly bankrupted me and was GET and CBT in disguise. (albeit, this was back in 2006-2007, so maybe they've changed since)
     
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