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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Mayo Clinic Minnesota and POTS

Messages
15,786
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.
 

Questus

Senior Member
Messages
125
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.
 

OverTheHills

Senior Member
Messages
465
Location
New Zealand
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
 

Mij

Messages
2,353
Would this be
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.

Would this be the same as Post-Viral Dysautonomia?
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
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.


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
 

Questus

Senior Member
Messages
125
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

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
 

Questus

Senior Member
Messages
125
Pasting:
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
 
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Messages
15,786
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
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.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
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.
 

Gingergrrl

Senior Member
Messages
16,171
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.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Some of that article looks interesting,
Postural tachycardia syndrome (POTS) is one of the most common manifestations of orthostatic intolerance.1, 2 According to current criteria for adults,3 POTS is defined by a heart rate increment of 30 beats/min or more within 10 minutes of standing or head-up tilt (HUT) in the absence of orthostatic hypotension; the standing heart rate is often 120 beats/min or higher. These criteria may not be applicable for individuals with low resting heart rate. For individuals aged 12 to 19 years, the required increment is at least 40 beats/min.3

The orthostatic tachycardia may be accompanied by symptoms of cerebral hypoperfusion and sympathetic hyperactivity that are relieved by recumbency. Symptoms of cerebral hypoperfusion include light-headedness, blurred vision, cognitive difficulties, and generalized weakness; symptoms of excessive sympathoexcitation include palpitations, chest pain, and tremulousness.

The term orthostatic intolerance is used to describe a condition in which patients develop symptoms on standing or HUT but do not fulfill the heart rate criteria for the diagnosis of POTS.4

The diagnostic criteria for orthostatic intolerance and POTS in adults are unsuitable for children and adolescents, and new criteria for these disorders in this age group have been recently proposed.5

POTS is more frequent in women (female:male ratio, 4.5:1), and most cases occur between the ages of 15 and 25 years. Up to 50% of cases have antecedent viral illness, and 25% have a family history of similar complaints
(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:
Finally and perhaps most importantly is the fundamental role of somatic hypervigilance, behavioral arousal, and emotional conditioning in the maintenance of the patient's orthostatic, as well as nonorthostatic, symptoms.

POTS is a prototypical chronic, potentially disabling condition with no clear pathologic substrate and multiple interacting pathophysiologic mechanisms. Thus, it resembles functional visceral pain/dysmotility disorders, fibromyalgia, chronic headache, and chronic fatigue syndrome. In POTS, as in all these comorbid disorders, symptoms frequently develop after a triggering factor such as a viral illness or surgical procedure and persist despite resolution of the underlying condition.

This suggests that whereas each of these conditions is defined by the most prominent symptom, their chronicity depends on common interacting mechanisms that likely reflect plastic changes in central nervous system areas involved in processing of interoceptive (visceral and somatic nociceptive) information, interoceptive awareness, behavioral arousal, and stress responses.

bolding and paragraph breaks added.
 
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WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
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.

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.
 
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Messages
9
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.

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.
 

Sidereal

Senior Member
Messages
4,856
This suggests that whereas each of these conditions is defined by the most prominent symptom, their chronicity depends on common interacting mechanisms that likely reflect plastic changes in central nervous system areas involved in processing of interoceptive (visceral and somatic nociceptive) information, interoceptive awareness, behavioral arousal, and stress responses.

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.
 

chipmunk1

Senior Member
Messages
765
This suggests that whereas each of these conditions is defined by the most prominent symptom, their chronicity depends on common interacting mechanisms that likely reflect plastic changes in central nervous system areas involved in processing of interoceptive (visceral and somatic nociceptive) information, interoceptive awareness, behavioral arousal, and stress responses..

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

PennyIA

Senior Member
Messages
728
Location
Iowa
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.
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)