Welcome to Phoenix Rising!
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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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 OTHValentjn, 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.
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.
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
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.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
(I didn't realize the amount of cases associated with viral onset was this high)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
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.
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.
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.
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 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..
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)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.