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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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POTS Rising! Research & Advocacy Producing Breakthroughs in Neglected Disease

Cort

Phoenix Rising Founder
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If you think ME/CFS and FM are behind the eight ball at the NIH then check out postural orthostatic tachycardia syndrome (POTS), a common comorbidity. The NIH doesn't even measure POTS funding but then how it could? POTS doesn't even have a designated funding stream there.

That hasn't stopped POTS researchers, though, from making huge strides in understanding the disease - strides that appear likely to end in the recognition that POTS is an autoimmune disease.

Check out how a small band of researchers and a young but dynamic support organization are making a major difference in a largely neglected disease - a difference which could have implications for ME/CFS and perhaps even fibromyalgia. Find out more in a Simmaron Research Foundation sponsored blog

POTS Rising! Research & Advocacy Producing Breakthroughs in Neglected Disease
 

Gingergrrl

Senior Member
Messages
16,171
Thank you @Cort for this important article. I believe without question that either ALL of POTS is an autoimmune disease or at minimum, there is an autoimmune subgroup.

I am the person you describe in the article with Autoimmune POTS. I have all the auto-antibodies you mentioned plus positive ANA and Hashimotos. The only autoantibody I do not know if I have is the angiotensin receptor one b/c I have not been tested for it (but would like to find out).
 

kangaSue

Senior Member
Messages
1,849
Location
Brisbane, Australia
@Cort I'm a member in a number of groups involved with having an abdominal vascular compression syndrome (SMA Syndrome, MALS (Median Arcuate Ligament Syndrome), renal Nutcracker Syndrome and May-Thurner Syndrome) where about 20% of patients with any one syndrome (many have 2 or more compression disorders) also have POTS (this figure from surveys done within the groups).

An interesting observation coming out of the groups that I have made is that, from having different surgeries to fix their various vascular compression disorders, POTS symptoms also resolve, or significantly improve, in a large number of patients.

There are cases where they also have an autoimmune conditions but few, if any, have been tested for the POTS antibodies that are showing up in other groups, mostly I guess because it has just been assumed POTS is a consequence for some people from having a compression disorder due to the amount of people who also have this comorbidity.

One common factor in all syndromes though is that the vagus nerve likely also gets compressed somewhere in the abdomen too due to other flow on splanchnic vessel dilation or organ blood flow compromise.

I'm intrigued about the Angiotensin II antibodies being found in POTS recently too as SMA Syndrome and Nutcracker Syndrome can both involve having left renal vein stenosis causing an increased venous pressure into the left adrenal gland. This then can cause a dysregulation of cortisol, aldosterone, renin, angiotensin (so basically the whole renin-angiotensin-aldosterone system) and I suspect, antidiuretic hormone too, all of which are involved to some degree in blood pressure regulation.
 

Cort

Phoenix Rising Founder
Thank you @Cort for this important article. I believe without question that either ALL of POTS is an autoimmune disease or at minimum, there is an autoimmune subgroup.

I am the person you describe in the article with Autoimmune POTS. I have all the auto-antibodies you mentioned plus positive ANA and Hashimotos. The only autoantibody I do not know if I have is the angiotensin receptor one b/c I have not been tested for it (but would like to find out).
I can only think that that's good news for you Gingergrrl...Good luck!
 

Cort

Phoenix Rising Founder
@Cort I'm a member in a number of groups involved with having an abdominal vascular compression syndrome (SMA Syndrome, MALS (Median Arcuate Ligament Syndrome), renal Nutcracker Syndrome and May-Thurner Syndrome) where about 20% of patients with any one syndrome (many have 2 or more compression disorders) also have POTS (this figure from surveys done within the groups).

An interesting observation coming out of the groups that I have made is that, from having different surgeries to fix their various vascular compression disorders, POTS symptoms also resolve, or significantly improve, in a large number of patients.

There are cases where they also have an autoimmune conditions but few, if any, have been tested for the POTS antibodies that are showing up in other groups, mostly I guess because it has just been assumed POTS is a consequence for some people from having a compression disorder due to the amount of people who also have this comorbidity.

One common factor in all syndromes though is that the vagus nerve likely also gets compressed somewhere in the abdomen too due to other flow on splanchnic vessel dilation or organ blood flow compromise.

I'm intrigued about the Angiotensin II antibodies being found in POTS recently too as SMA Syndrome and Nutcracker Syndrome can both involve having left renal vein stenosis causing an increased venous pressure into the left adrenal gland. This then can cause a dysregulation of cortisol, aldosterone, renin, angiotensin (so basically the whole renin-angiotensin-aldosterone system) and I suspect, antidiuretic hormone too, all of which are involved to some degree in blood pressure regulation.
Fascinating I had never heard of vascular compression syndrome syndrome. It sure sounds like some autoantibodies could be involved.
 

Gingergrrl

Senior Member
Messages
16,171
I can only think that that's good news for you Gingergrrl...Good luck!

Thank you so much and it feels like a lot of my personal experience with Autoimmune POTS (and other autoimmunity) is starting to line up with a lot of this new research. But I have no idea where this will all lead to in the future. But I agree that it is good and it gives me hope.