Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Questus, Aug 15, 2013.
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.
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.
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
Would this be
Would this be the same as Post-Viral Dysautonomia?
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!
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.
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
Interesting, since very recent patient accounts still say they're trying to stick us in the psych ward 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.
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.
What type of treatment for ME/CFS do they offer at Mayoclinic? Do they offer kutapressin and other things, etc?
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.
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.
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.
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.
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.
Neurobabble.. this is when a drunk neurologist or a sober psychiatrist fantasizes about the cause of unexplained illnesses.
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)
You can also try a Google Site Search
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