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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Dr David Bell joins Open Medicine Foundation board

LiveAgain

Senior Member
Messages
103
@Justin30 I had the Daxor blood volume test twice about 8 years apart. The first one came back normal and a recent one came back mildly elevated.

I had the skin biopsy for SFN which came back very abnormal. I had another done a few months later (long story) which came back normal. This made no sense since at that point I had neuropathic symptoms for over 14 years and definitely wasn't improving. We then did a QSART which was very abnormal at all 4 sites and SFN was confirmed again. I was told neuropathy can be patchy and therefore the biopsy can miss it. I mention the 2nd skin biopsy because its supposed to be the gold standard but I want people to know its not 100% and can miss cases of SFN.

Yes, there does seem to be the belief that autoimmune conditions can cause SFN which can cause POTS. Also, there is that study on adrenergic antibodies in POTS which I guess would cause POTS directly? There is a larger replication study going on and hopefully almost complete which should give us more answers about this.

I don't understand why SFN hasn't been studied in ME/CFS since (at least) 1/2 of people with POTS have SFN and it's looking like fibromyalgia might actually be SFN related and there's so much overlap between these conditions. I think any ME patient with sensory or autonomic symptoms should definitely look into this.
 

Justin30

Senior Member
Messages
1,065
@Justin30 I had the Daxor blood volume test twice about 8 years apart. The first one came back normal and a recent one came back mildly elevated.

I had the skin biopsy for SFN which came back very abnormal. I had another done a few months later (long story) which came back normal. This made no sense since at that point I had neuropathic symptoms for over 14 years and definitely wasn't improving. We then did a QSART which was very abnormal at all 4 sites and SFN was confirmed again. I was told neuropathy can be patchy and therefore the biopsy can miss it. I mention the 2nd skin biopsy because its supposed to be the gold standard but I want people to know its not 100% and can miss cases of SFN.

Yes, there does seem to be the belief that autoimmune conditions can cause SFN which can cause POTS. Also, there is that study on adrenergic antibodies in POTS which I guess would cause POTS directly? There is a larger replication study going on and hopefully almost complete which should give us more answers about this.

I don't understand why SFN hasn't been studied in ME/CFS since (at least) 1/2 of people with POTS have SFN and it's looking like fibromyalgia might actually be SFN related and there's so much overlap between these conditions. I think any ME patient with sensory or autonomic symptoms should definitely look into this.

Ok thank you for sharing I appreciate it. I was thinking that those would be the tests.

I am seeing such an overlap with both especially if one has POTS. Both the Anti Arenergic Antibodies and SFN seem like these these are both autoimmune mediated to some degree.

From what I understand SFN can cause pain, tingling, numbness, GI pain, autonomic dysfuction, peripheral dysfunction and more.

I would assume this would be similar to Adrenergic form as well.

The Adrenergic form can be caused by Lupus, sjorgens, Hashimotos, EBV, Other viruses, bacterial infections, Lyme disease, chemical exposure, etc.

Seems like maybe a large subset could be tied up in these 2 groups for ME/CFS Patients. Especially if the Neurapathy or receptor problem becomes systemic. Like brain, organs, etc.

Dr. Oaklander at Harvard deals with this.

The theory when you look at it makes a ton of sense when you have high degrees or pain or a lot of neurological symptoms.

Small fibers demylination like MS or the receptors are dyregulated-leading to less blood getting to the area of the body due to autonomic dyregulation-leading too pain, numbness, tingling-leading to fatigue/PEM.

It makes a lot of sense to me. Now imagine like in MS you have dylemylination to the small fibers leading into the CNS? It would be ME....

Im am know Dr just see something that I think is being overlooked.
 

Old Bones

Senior Member
Messages
808
My POTS is due to small fiber neuropathy.

@LiveAgain Based on your experience, is POTS that is caused by SFN fairly consistent from day to day, or are the symptoms quite variable based on sleep quality/duration and activity level, for example? The latter is my experience. Although I haven't been diagnosed with SFN, I did develop the symptoms together with rheumatoid arthritis.
 

LiveAgain

Senior Member
Messages
103
@Justin30 I'm no scientist either and have a very simplistic understanding of this stuff but my understanding is there are small fiber sensory nerves and small fiber autonomic nerves. If the sensory nerves are affected, you get burning, tingling, itching, numbness etc. and if autonomic nerves are affected.. well, the list of possible symptoms is endless. These nerves are everywhere.. skin, blood vessels, organs etc. so it's really not a good thing.

The problem is 50 million things cause SFN, some that you mentioned - and it takes a lot of time and investigation to rule all of that out. I've been tested for most known causes, from the very common to the very rare to no avail, so I have to assume the cause just isn't discovered by science yet.

I recently watched a video presentation by Dr. Oaklander and was excited to see she's pursuing this line of investigation. I agree they should look at this in ME/CFS, as it could be a piece of the puzzle and might explain a lot of it, as you described. I was hoping they would include skin biopsies and QSART in the NIH study.

As far as the brain and SFN, I don't really understand what this paper is saying (below) but it appears they've connected the two. "Small-fiber neuropathy (SFN) is hallmarked by degeneration of small unmyelinated peripheral nerve fibers in the skin. Traditionally, it has been considered as a pure disorder of the peripheral nervous system. Nevertheless, previous work found that dysfunction of skin nerves led to abnormal recruitment of pain-related regions, suggesting that the brain may be affected in SFN."

https://www.ncbi.nlm.nih.gov/pubmed/25734991

@Old Bones I'd say I have the same daily baseline of symptoms, but definitely activity level, poor sleep and other factors can worsen things. I also find this condition to be slowly progressive, as the symptoms and my functioning have worsened over time.
 

beaker

ME/cfs 1986
Messages
773
Location
USA
So he was able to study the blood volume of the severely ill? I am havin a rough day..brain and eyes are just a mess

You were tested by him?

It would be interesting to put some of these severely ill patients through current mayo clinic tests for Dyautonomia/POTS and some of the dysregulated receptor type tests?

CBV is tested through nuclear medicine. He used a University near me, and I had it done there by same people.
There are degrees of "severely ill" . Obviously those he tested were able to get to the center-- No way to do nuclear med tests unless you can be there. Of those he tested, he said that the ones who were the sickest/severely ill, he thought would have the worst results .Instead they came out normal .
 

Sing

Senior Member
Messages
1,782
Location
New England
I bet that low blood volume is positively correlated with excessive thirst and urination. Many here have the latter, including me. The quantities of water I need to drink are far in excess of normal. This can be called central diabetes insipidus but it isn't fixed just with desmopressin or fludrocortisone as far as I know. I have never been able to tolerate much of the latter anyway as I get unacceptable side effects from both. I expect the reason for the problem of excessive thirst and urination is that the body has reset itself for low blood volume, maybe because of narrowed blood vessels, I don't know. In any case, it isn't just a hormonal problem remedied by desmopressin or fludrocortisone.
 

Sing

Senior Member
Messages
1,782
Location
New England
I wonder what got you better from the DI, Sushi?

What I meant to say about DI and low blood volume, is that it stands to reason that if one has very low blood volume, that the body will recognize this and try to up the fluid intake. However, it turns out that this never solves the real problem. Extra fluid and or salt help somewhat temporarily but then the low blood volume and pressure, etc. quickly return as bad as ever. Something else--narrowed vessels?--is behind this problem.

It seems to me that persistent, extremely low blood volume and pressure, to the degree that many of us seem to have them, ought to be attractive to funders and researchers who prioritize according to critical need. These are clear, dramatic symptoms--not subtle or vague in the least. I am glad that Dr. Bell documented and studied the presence of low blood volume--maybe thinking that this possibly could be a straightforward enough, sufficiently dramatic and dangerous enough problem, to finally attract some long-needed, long-deserved research money.
 

Sing

Senior Member
Messages
1,782
Location
New England
Dr. Bell said in this talk that a plumber gave him the idea of what could be wrong--narrowed blood vessels. But I don't remember if he explained why he thought this could happen. He probably knows more than he could get into in this talk. I hope he can crank up OMI to research this subject of low blood volume.

As for the sickest patients who didn't seem to have low blood volume--I wonder if there is something different going on with them? I assume these are the people who are bed bound. The others above, like myself, may be more of the "walking wounded".
 
Last edited:

ryan31337

Senior Member
Messages
664
Location
South East, England
... it stands to reason that if one has very low blood volume, that the body will recognize this and try to up the fluid intake. However, it turns out that this never solves the real problem. Extra fluid and or salt help somewhat temporarily but then the low blood volume and pressure, etc. quickly return as bad as ever. Something else--narrowed vessels?--is behind this problem.

There's some interesting info here: https://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=38938 - and related study here: http://www.ncbi.nlm.nih.gov/pubmed/15781744

I'm paying back over-activity from yesterday so forgive me if I'm talking nonsense but I think the consensus is as you say, the problem is deeper than the obvious volume controlling hormones and goes back further to the kidney. The renin-angiotensin-aldosterone axis is screwed, possibly as a direct result of the abnormal sympathetic nervous system activity we experience and/or kidney denervation.
 

Sing

Senior Member
Messages
1,782
Location
New England
Very interesting talk by Dr. Oaklander above, which @LiveAgain shared. It appears that those small unmyelinated fibers are nearly everywhere. They make up over 80% of an axon which also has myelinated fiber. They also control blood flow to vessels in muscles, so that if they are damaged, the blood goes elsewhere and leaves the muscles aching and without oxygen. They affect whether those vessels are open or shut! So I wonder if having damaged small fibers to the vessels could result in lowered blood volume? She didn't mention low blood volume.

Even though the unmyelinated fibers are nearly everywhere and hugely important, it has been only the myelinated fibers and their diseases which have been studied much so far. She and colleagues are making great progress, it appears, in learning what damage to them comes from and results in. There seems to be an autoimmune cause in half of young people with this kind of neuropathy, that they have found so far, and she finds this is often treatable with corticosteroids or IVIG. Older people who have had it much longer or have later onset, also benefit from those treatments.

Also, when she studied and developed a list of the most common symptoms for those with what she calls SFPN (Small Fiber Polyneuropathy), at the top of the list are fatigue, weakness, deep aching, brain fog, cognitive difficulties--our list! What is much farther down the list is the symptom that has been taught for this in med school--numbness and burning.

All of the above is via memory which is poor so do watch this video if interested. I think it is about an hour. She identifies a website for further information http://NeuropathyCommons.org/
 

*GG*

senior member
Messages
6,390
Location
Concord, NH
Not Dr Oaklander, but think this guy does similar work or works with her?:

https://www.masscfids.org/news-events/622-fibromyalgia-and-small-fiber-polyneuropathy

GG

From my link above:

Dr. Farhad has provided copies of the research articles that he mentioned in his talk.

Caro XJ et al, “Evidence of Abnormal Epidermal Nerve Fiber Density in Fibromyalgia, Clinical and Immunologic Implications,” Arthritis & Rheumatology: 66, No. 7 (July 2014): 1945–1954.

Kosmidis ML…Dalakas MC et al, Reduction of Intraepidermal Nerve Fiber Density (IENFD) in the skin biopsies of patients with fibromyalgia: A controlled study,” Journal of the Neurological Sciences 347 (2014): 143–147.

Giannoccaro MP et al, “Small Nerve Fiber Involvement In Patients Referred For Fibromyalgia,” Muscle Nerve 49 (2014): 757–759.

Oaklander AL, et al, “Objective evidence that small-fiber polyneuropathy underlies some illnesses currently labeled as fibromyalgia,” Pain 154, No. 11 (November 2013).

Oaklander AL, et al, “Evidence of Small-Fiber Polyneuropathy in Unexplained, Juvenile-Onset, Widespread Pain Syndromes,” Pediatrics 131 No. 4 (2013).

Uceyler N et al, “Small fibre pathology in patients with fibromyalgia syndrome,” Brain 136 (2013): 1857–1867.
 

Justin30

Senior Member
Messages
1,065
Did you notice how she mentioned how There was an infectious trigger mentioned.

I cant wait to see the results amd the symptoms list that she said will be published in a study.

Wouldn't it make so much sense? That this part of ME?

I hope our community reaches out to Dr Oaklander.

I tried sending an email but no response yet. I think we should reach out to her as a community?
 

Sing

Senior Member
Messages
1,782
Location
New England
Interesting - Dr Bell says (at 32:40 or so) that severe ME patients don't respond to IV saline and don't have reduced blood volume.

Having just watched this video of Dr. Bell again, I wonder if a possible explanation could be that the most severely ill are lying down virtually all the time? In that case, maybe their blood vessels aren't narrowed or doing whatever they might be doing to keep the blood volume low? I know this is a mechanical explanation but Dr. Bell seemed inclined to a mechanical explanation for the low blood volume while standing and walking. At least on one level the explanation seems mechanical.