POTS and ME/CFS Same etiology?

[Gail C]

Some think the etiology will be the same. How wonderful it would be if researchers from the two fields pooled their resources!

"A substantial overlap between POTS and CFS has been consistently reported in the literature [10,11,15,16]. The prevalence of POTS in CFS patients has ranged from 19% [7] to 70% [10], whereas studies in cohorts of patients selected for POTS have shown a prevalence of chronic fatigue between 48 and 77% [15,17], and CFS between 17 and 23% [17,18]. Furthermore, increased sympathetic activation and low BVs (blood volumes) have been proposed as pathophysiological mechanisms in both conditions [4,11,19–21]. The aim of the present study was to compare the clinical, autonomic and neurohumoral features of POTS patients with and without CFS, to determine whether POTS patients with CFS represent a unique clinical entity with a distinct pathophysiology, or are a subset of patients within the spectrum of POTS."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3203411/

 

[weyland]

As both are known to be triggered by viral infection it wouldn't be surprising if there are some similarities. I think there is some danger in overlapping criteria though, where a POTS patient could meet certain CFS criteria but not actually have CFS. There are definitely overlapping findings though, such as β2 adrenergic and M1 muscarinic acetylcholine autoantibodies. But were these just POTS patients that also had CFS, and vice versa?

The ideal test case would be to compare POTS patients to strictly defined (i.e. post exertional flu-like symptoms) ME patients who don't have POTS.

 

[ShyestofFlies]

I do not think that ME/CFS and POTS will end up being the disease any more than FM and ME/CFS will- but the same cause(s)? Possible.


However, I think it is also possible that given all the bio issues we have found some evidence for in ME/CFS research, that ME/CFS may be a distinct form of dysautonomia (which I believe it is possible to have more than one).

While I wouldn't make bets personally, I also wouldn't be suprised if this theory has or does emerge.

POTS in a number of people is reported to improve with exercise, ME/CFS is not.
I think it is likely a comorbid condition with a high likelihood of co-occurance in one or more subsets of ME and/or CFS.

We have research indicating that autoimmunity can start with viral infections and other "offenses" to the body. It wouldn't suprise me if these reasons were common beyond our group of illnesses and comorbidities, but many others as well.

 

[Gail C]

As both are known to be triggered by viral infection it wouldn't be surprising if there are some similarities. I think there is some danger in overlapping criteria though, where a POTS patient could meet certain CFS criteria but not actually have CFS. There are definitely overlapping findings though, such as β2 adrenergic and M1 muscarinic acetylcholine autoantibodies. But were these just POTS patients that also had CFS, and vice versa?

The ideal test case would be to compare POTS patients to strictly defined (i.e. post exertional flu-like symptoms) ME patients who don't have POTS.

weyland, there is also the recent findings that some POTS patients have Dense Granule Storage Deficiency. One of those granules is ATP, which seems to be a hot topic in ME just now. Cort was also tweeting about TGF-Beta (a cytokine), and some of us testing for elevated TGF-Beta have been found to have way more than we need. It is one of those that is essential to good health if it stays within range, but can be damaging at higher levels. Mine is about 3 x the upper limits of normal.

https://ash.confex.com/ash/2009/webprogram/Paper24290.html

Seems to me the lines are blurring?

 

[Gail C]

POTS in a number of people is reported to improve with exercise, ME/CFS is not. I think it is likely a comorbid condition with a high likelihood of co-occurance in one or more subsets of ME and/or CFS.

Shy, whether one improves with exercise really depends upon which type of POTS one has. Not everyone does. Those with Primary POTS falls into the does not group.

Comorbid... yes, I would agree ... similarly to MCA.

 

[Gail C]

And this is known as cerebral hypoperfusion in POTS :


Cort Johnson ‏@CortJohnson
#IACFS/ME #ME/CFS: Natelson - results over time indicate that reduced cerebral blood flows are present in ME/CFS

 

[weyland]

https://ash.confex.com/ash/2009/webprogram/Paper24290.html

Thanks, hadn't seen that one before. Low serotonin is hypothesized to occur in ME as well.

HDRI offers a test for this.

 

[Seven]

Is have both and I can tell them apart. Cfs is more inmune( fluish, lymph pain, inflammation) and unable to produce energy on demand. Vs the things I struggle w POTs are more vasodilation related like: inability to be upright, swallowing, pupils dilates....
They both make you really tired. W CFS you hit a wall that cannot be passed. plp w POTs if it comes to emergency they will find the energy to react. W CFS you can see a truck coming and nothing u can do.
I hope I explained it well.

 

[Hello!]

Time will tell.

Having recently gotten to know one of the big name MD's in POTS and loads of his patients, I can tell you that they believe everything is POTS. They dismiss ME/CFS entirely. Everything is POTS. They really think they have found the holy grail. The MD has beeen to ME/CFS conferences, knows many of the big researchers, but dismisses it all as POTS. The MD does think there is sometimes a viral component and treats with antivirals, when warranted, with some success. He and his followers are all big proponents of Mast Cell Activation being a sustaining factor in POTS.

It's myopic. The POTS religion is keeping those with ME/CFS from seeing that their POTS symptoms are a mere portion of their larger health problem. They don't know about any ME/CFS research, MD's, patient communities, or potential treatments as such things are heresy.

 

[weyland]

The POTS religion is keeping those with ME/CFS from seeing that their POTS symptoms are a mere portion of their larger health problem.

Can't blame them. POTS can be diagnosed objectively, CFS can't. I'm sure many POTS patients fit various combinations of Fukuda criteria symptoms, but I don't think they all have ME. Having spent considerable time around various POTS/dysautonomia forums, their experiences are definitely similar, but I've never seen an obvious POTS only patient describe having the PEM that is characteristic of ME.

 

[Gail C]

HDRI offers a test for this.

And thanks to you weyland. I didn't know that low Serotonin was associated with Mastocytosis. I don't seem to have Masto, but do have high Tryptase so will have a deeper look.

I'm sure many POTS patients fit various combinations of Fukuda criteria symptoms, but I don't think they all have ME. Having spent considerable time around various POTS/dysautonomia forums, their experiences are definitely similar, but I've never seen an obvious POTS only patient describe having the PEM that is characteristic of ME.

I think some of us do have something similar if not exactly the same. In POTS it is explained by the increases in Norepinephrine and Mast Cell Activation that occur with exercise. But I have no idea if that is all that takes place, so who knows.

W CFS you hit a wall that cannot be passed. plp w POTs if it comes to emergency they will find the energy to react. W CFS you can see a truck coming and nothing u can do.
I hope I explained it well.

You did Seven. Thank you. But is that true of all? I know some with POTS who literately cannot stand up, although that is not the norm (if there is a norm!), and it is not from stressing their bodies. Then there are some who seem to have very mild symptoms as long as they don't overdo.

Time will tell.

Having recently gotten to know one of the big name MD's in POTS and loads of his patients, I can tell you that they believe everything is POTS. They dismiss ME/CFS entirely. Everything is POTS. They really think they have found the holy grail. The MD has beeen to ME/CFS conferences, knows many of the big researchers, but dismisses it all as POTS. The MD does think there is sometimes a viral component and treats with antivirals, when warranted, with some success. He and his followers are all big proponents of Mast Cell Activation being a sustaining factor in POTS.

It's myopic. The POTS religion is keeping those with ME/CFS from seeing that their POTS symptoms are a mere portion of their larger health problem. They don't know about any ME/CFS research, MD's, patient communities, or potential treatments as such things are heresy.

Hi Hello! You may know of Drs Castells and Akin in Boston. They are considered be the foremost authorities in the US on Mast Cells and the issues they can cause. They have each co-authored papers recently which dispute the notion that Mast Cells cause or sustain POTS. They believe they are coexisting problems. I can dig up links if anyone wants them.

For those of us us with both, treating one certainly helps the other. For example, since Neuropeptide Y, a Mast Cell Activator, is coreleased with Norepinephrine, reducing Norepinephrine can reduce MCA. Further, I simply feel better overall because I treat MCA.

I do agree that that some have lenses that don't favor the patient all in my opinion.

 

[Seven]

ho literately cannot stand up, although that is not the norm

I think a lot of plp I see in forums do have CFS also and they don't know but as they speak I can tell. So might be what you have seen. Yes they cannot stand ( the dizziness or upright is too much) but a plain POTsy inability of talk and unable to open eyes to communicate for long periods of time. I have not come acrossed) so not that I know of (with the exception of the ones I think have CFS also and the way I know is because they complain of lymph issues also excercise relapse ( vs intolerance)

 

[AquaFit]

Not sure if anyone's still following this thread, but in case:
There was an article in the Canadian newspaper Toronto Star today on POTS. I've been asking one of their reporters to do an article on ME/CFS and she said she would pass it on, though this article may be a coincidence. No mention of ME/CFS. https://www.thestar.com/news/gta/20...n-doctors-are-only-starting-to-recognize.html

Speaking of varying labels for the same condition, I've been reading government studies on POTS, ME, CFS, MS, Autoimmune Myasthenia Gravis, Rheumatoid Arthritis and Pseudocholinesterase Deficiency, all of which consider acetylcholine. I thought this was fascinating. A theory of Alzheimers is that it's caused by anticholinergic medication use throughout life. (Which lowers levels of acetylcholine in the body). Rituxamab targets acetylcholine receptors. (Weyland mentioned previously in this thread a studies I'll link to below re POTS and CFS.) Apparently abnormal growths in the body, including cancer, can trigger an autoimmune response.


https://www.ncbi.nlm.nih.gov/pubmed/26785775 Effect of M3 muscarinic acetylcholine receptor deficiency on collagen antibody-induced arthritis.
https://www.ncbi.nlm.nih.gov/pubmed/25087056 The value of acetylcholine receptor antibody in children with postural tachycardia syndrome.
https://www.ncbi.nlm.nih.gov/pubmed/26399744 Antibodies to β adrenergic and muscarinic cholinergic receptors in patients with Chronic Fatigue Syndrome.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3497293/ Relation between Pro-inflammatory Cytokines and Acetylcholine Levels in Relapsing-Remitting Multiple Sclerosis Patients
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC153771/ Immunization with neuronal nicotinic acetylcholine receptor induces neurological autoimmune disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5105265/ A targeted genome association study examining transient receptor potential ion channels, acetylcholine receptors, and adrenergic receptors in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
https://www.ncbi.nlm.nih.gov/pubmed/15190684 Alzheimer's disease and acetylcholine receptors.
https://rarediseases.org/rare-diseases/pseudocholinesterase-deficiency/

There's a test which determines if a person would be sensitive to the anesthetic Succinylcholine. (It also tests for organophosphate poisoning.) If this test determines a person who has naturally low acetylcholine, and all these studies above are studies of people who are low on acetylcholine, then...could this be the test for a whole subgroup which is the same across different diseases?

 

[Cort]

Not sure if anyone's still following this thread, but in case:
There was an article in the Canadian newspaper Toronto Star today on POTS. I've been asking one of their reporters to do an article on ME/CFS and she said she would pass it on, though this article may be a coincidence. No mention of ME/CFS. https://www.thestar.com/news/gta/20...n-doctors-are-only-starting-to-recognize.html

Speaking of varying labels for the same condition, I've been reading government studies on POTS, ME, CFS, MS, Autoimmune Myasthenia Gravis, Rheumatoid Arthritis and Pseudocholinesterase Deficiency, all of which consider acetylcholine. I thought this was fascinating. A theory of Alzheimers is that it's caused by anticholinergic medication use throughout life. (Which lowers levels of acetylcholine in the body). Rituxamab targets acetylcholine receptors. (Weyland mentioned previously in this thread a studies I'll link to below re POTS and CFS.) Apparently abnormal growths in the body, including cancer, can trigger an autoimmune response.


https://www.ncbi.nlm.nih.gov/pubmed/26785775 Effect of M3 muscarinic acetylcholine receptor deficiency on collagen antibody-induced arthritis.
https://www.ncbi.nlm.nih.gov/pubmed/25087056 The value of acetylcholine receptor antibody in children with postural tachycardia syndrome.
https://www.ncbi.nlm.nih.gov/pubmed/26399744 Antibodies to β adrenergic and muscarinic cholinergic receptors in patients with Chronic Fatigue Syndrome.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3497293/ Relation between Pro-inflammatory Cytokines and Acetylcholine Levels in Relapsing-Remitting Multiple Sclerosis Patients
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC153771/ Immunization with neuronal nicotinic acetylcholine receptor induces neurological autoimmune disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5105265/ A targeted genome association study examining transient receptor potential ion channels, acetylcholine receptors, and adrenergic receptors in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
https://www.ncbi.nlm.nih.gov/pubmed/15190684 Alzheimer's disease and acetylcholine receptors.
https://rarediseases.org/rare-diseases/pseudocholinesterase-deficiency/

There's a test which determines if a person would be sensitive to the anesthetic Succinylcholine. (It also tests for organophosphate poisoning.) If this test determines a person who has naturally low acetylcholine, and all these studies above are studies of people who are low on acetylcholine, then...could this be the test for a whole subgroup which is the same across different diseases?

Thanks.

I imagine that for many doctors reading that newspaper this is the first time they've heard of POTS. It's horrifying the suffering the medical profession sometimes brings on people...

I completely missed those ME/CFS antibody papers - thanks for mentioning

In 2015, Patterson began taking her daughter to doctors in their hometown of London, Ont., in Hamilton, in Toronto. She estimates there were about 50 appointments and tests in all, in little more than a year.
Multiple doctors told Patterson her daughter was suffering from mental health issues, not physical ailments.
Patterson says it seemed like they had formulated that opinion before her daughter even walked through the door.
“You’re going in there with legitimate physical symptoms and you’re getting questions like ‘What’s going on at home?’ or ‘Anything stressing you out right now?’”

This summer, with help from the Ontario Ministry of Health, Patterson took her daughter to the Mayo Clinic, where she was diagnosed with orthostatic intolerance and other conditions, including the connective tissue-related Ehlers-Danlos Syndrome.

 

[Gail C]

@AquaFit ... interesting thoughts and reading list. Thank you! I have a long list of stuff I want to read and will add these. I got behind during the holidays and time spend nursing a head cold.

I have some friends in Canada, and I feel for them. They seem to have more problems that we in the US do with finding help...and that is horrible considering what most face here.

 

[Eset Isadore]

Time will tell.

Having recently gotten to know one of the big name MD's in POTS and loads of his patients, I can tell you that they believe everything is POTS. They dismiss ME/CFS entirely. Everything is POTS. They really think they have found the holy grail. The MD has beeen to ME/CFS conferences, knows many of the big researchers, but dismisses it all as POTS. The MD does think there is sometimes a viral component and treats with antivirals, when warranted, with some success. He and his followers are all big proponents of Mast Cell Activation being a sustaining factor in POTS.

It's myopic. The POTS religion is keeping those with ME/CFS from seeing that their POTS symptoms are a mere portion of their larger health problem. They don't know about any ME/CFS research, MD's, patient communities, or potential treatments as such things are heresy.

This is what I experienced. I had a fabulous and experienced doctor put me through the autonomic testing today. It showed widespread autonomic dysfunction (for which POTS would be too limited a category, he said). He strongly suspects EDS too.

But he emphatically believes ME does not exist as a distinct category. He thinks it’s all dysautonomia. His solutions included low-dose clonidine nightly and....exercise. I’ve been housebound, and primarily when not entirely bedbound for 18 months. I have very limiting PEM. I found him very thoughtful otherwise, but simply had no strength to counter this assertion with enough insight or substance.

I’ve not been well enough to gather a slim binder of research for purposes of orienting unfamiliar physicians to my SEID/ME. I will have communication with him through the online portal. Any suggestions regarding resources specifically for a specialist of this sort?

 

[weyland]

But he emphatically believes ME does not exist as a distinct category. He thinks it’s all dysautonomia.

That is unlikely to be true. In the Ramsay/Dowsett cohort study, 69% had outward signs of autonomic dysfunction and only 21% had orthostatic tachycardia. Clearly you can have ME without dysautonomia. It can cause a large part of the symptoms in those that have it but I don't believe it's the cause of the disease ME.

[bimg=no-lightbox]http://i.imgur.com/jeLwhEI.png[/bimg]

 

[IrisRV]

But he emphatically believes ME does not exist as a distinct category. He thinks it’s all dysautonomia.

This may be a case of "to the man with a hammer, everything is a nail". If this doctor is extremely well-versed in dysautonomia, but not so much in ME, he may not have a full understanding of all the abnormalities and symptomology in ME. If he sees ME patients, they are likely to be ones with clear dysautonomia symptoms, so again, ME will look like dysautonomia to him.

I'm willing to bet many people with conditions PCP's are not very familiar with such as dysautonomia, or some types of thyroid disorders, get diagnosed with "CFS" because the patients complain of fatigue that the PCP can't explain. This is where CFS becomes a wastebasket diagnosis. Lazy or ignorant doctors throw every fatigued patient into 'CFS' when many (most?) don't meet ME/CFS criteria.

So yes, many supposed ME/CFS patients may actually be pure dysautonomia patients in actual fact. But not all of us are.

 

[Eset Isadore]

That is unlikely to be true. In the Ramsay/Dowsett cohort study, 69% had outward signs of autonomic dysfunction and only 21% had orthostatic tachycardia. Clearly you can have ME without dysautonomia. It can cause a large part of the symptoms in those that have it but I don't believe it's the cause of the disease ME.

[bimg=no-lightbox]http://i.imgur.com/jeLwhEI.png[/bimg]

Thank you for sharing this with me! If I can gather myself sufficiently, I’ll find means to share it with him.