Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

[tyson oberle]

One theory is that the cold hands and feet found in many ME/CFS patients are caused by sympathetic nervous system overactivation

About a year ago I did a test called Glycocheck that showed that I have very low capillary density and I feel pretty sure that's why I have ice cold hands and feet. At first I wasn't sure if this was a legitimate test so about a month later I had my mom and my brother do the test as a control because they don't have ME/CFS and they don't have cold hands and feet and my mom's capillary density was 80% more than mine and my brother's was 300% more than mine. I also believe that my very low capillary density is why I have unrelenting constant chronic fatigue because from my research it's mostly the capillaries that transport oxygen and nutrients into cells, tissues and organs and not the arteries or veins.

 

[Hip]

I did a test called Glycocheck that showed that I have very low capillary density and I feel pretty sure that's why I have ice cold hands and feet.

Interesting.

In my case, the Coxsackie B4 virus which triggered my ME/CFS also spread to friends and family, and a few people started complaining about cold hands and feet after acquiring this virus (even though they did not get ME/CFS).

I wonder if this virus might have chronically infected the sympathetic nerves or nerve ganglia, causing sympathetic hyperactivation.

My virus seemed to have affinity for the nerves, because after I caught it, the tactile sensitivity of the skin throughout my body seemed to noticeably decrease, kind of permanently semi-numbing all my skin.

 

[Wishful]

@datadragon your attempts to relate every single discussion on any subject whatsoever on PR back to zinc are pseudoscientific.

I noticed this news item today: https://newatlas.com/medical/zinc-lung-macrophages-anti-bacterial-cystic-fibrosis/

Zinc can be an effective treatment for some people. However: " the researchers found that, in CF, lung macrophages can’t properly use zinc as an anti-bacterial agent." So, this is a special case, and doesn't apply to people without this specific mutation. I expect there are a lot of medical treatment claims based on misapplying the results of rare conditions to the general population.

 

[kangaSue]

Yes, I've heard of people getting a stellate ganglion block as an experimental treatment for ME/CFS and long COVID (the stellate ganglion is located in the neck). This block can calm the sympathetic nerves in the neck, head, upper chest and upper arm

Yes, I've seen a lot of accounts of doing just a stellate ganglion block. The point of difference in the above study though and what I haven't come across before was doing nerve blocks in multiple points at the one time.

I'd like to find some effective ways of calming my SNS

Have you tried any form of 'whole body vibration therapy'? There's a body of evidence suggesting that any form of mechanical vibration therapy has a toning effect on the SNS but no doubt the tolerance of such a therapy will vary between individuals.

It could be something that covers more of the bases when you're looking for more of a system-wide effect on the SNS though, and can be attained with vibration ranging from the vigorous (exercise vibration plate) to gentle stimulation (some form of vibrating chair or mattress, or vibroacoustic stimulation) if it's something one could tolerate.

A bonus is that it can be effective for chronic pain too.
https://www.medcentral.com/pain/pt-...al-benefits-management-pain-physical-function
https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-019-1932-9

 

[Rufous McKinney]

'whole body vibration therapy'?

Everybody in town was dropping by to use the $10,000 vibrating machine. Ten to twenty minute sessions. They loved it.

About three minutes on this machine made me profoundly ill, toxic, crashed, PEM-ridden and awful.

Just like massages, acupuncture, etc.

 

[Wishful]

Everybody in town was dropping by to use the $10,000 vibrating machine.

The latest rebirth of the old "melt your belly fat away!" fad popular in the 50's or 60's? I think it used a belt pulled back and forth across your belly.

 

[Rufous McKinney]

This machine is very popular with intense athletes and sports medicine places.

It moves the entire lymphatic system.

That is the problem. They weren't coming for weight loss. So those of us who have impaired detox pathways, get really messed up there.

 

[Dude]

One question the researchers wanted to answer is what happens to exhausted T-cells once they no longer have exposure to the virus or cancer that exhausted them. Do they then become un-exhausted? Well they found that once the exposure was removed, most of the T-cells died. But the ones that survived still remained exhausted, as they are epigenetically programmed to be in the exhausted state.

Your hypothesis would be supported by the following study: "Remission of severe forms of long COVID following monoclonal antibody (MCA) infusions: A report of signal index cases and call for targeted research". Accordingly, the condition of long COVID patients improves once the virus has been successfully removed.

MCA treatment was able to completely-reverse the profound chronic fatigue and “brain fog” of long COVID within days of administration

 

[Mary]

Have you tried any form of 'whole body vibration therapy'?

I tried this at my chiropractor's office a few years ago - I thought, aha! a form of exercise I can tolerate, just stand and vibrate for 10 minutes or so - and I tolerated it just fine, until I crashed the next day, like @Rufous McKinney . I don't think I had the toxic overload, just a garden variety crash from over-exertion even though it was the machine doing all the exerting.

 

[Mary]

So for ME/CFS patients with a chronically over-active sympathetic nervous system, finding some way to calm sympathetic activity could reduce T-cell exhaustion, and thereby boost the antiviral potency of your T-cells.

I have a feeling that my sympathetic nervous system is permanently wired in the active state.

I'd like to find some effective ways of calming my SNS.

My nervous system is somehow jacked up, extremely reactive to simple things

I have found the pose described in this post to be very calming, and when done multiple days in a row, my sleep starts to improve. I've been doing it now regularly for a few weeks, and sleep is definitely better. I had avoided doing the pose long-term because it seemed to also stimulate my thyroid after several days (making my sleep worse!), but I don't think it's doing that this time. About halfway down the post you'll see a link to an article about Stephen Stitler, the naturopath who told me about this, and it also has a picture of him doing it. I've been doing it for about 40 minutes a day. Also, I was told by some members who did this late in the day that it make it very difficult for them to sleep, so I always make sure I'm done by 3:30 at the latest.

Also, earthing or grounding can help activate the parasympathetic nervous system. https://betterearthing.com.au/earthing-calm-nervous-system/
I used to do grounding (feet literally on the ground - cement in my case) where I use to live for up to 2 hours in a day, and it helped a lot with sleep too. However, I can't do it where I live now because they spray herbicides and chemicals on the grass. So I bought a small handheld PEMF device after @Wayne wrote about how his (large) PEMF device helped him with sleep. Here's the PEMF device I bought; https://resona.health/vibe24/?gad_s...0Dyl9wp6-8FG4_dK2wVjLjx2h46cuF2BoC-_YQAvD_BwE

Something is helping me a lot with sleep which has been very difficult for many years. I don't know if it's this PEMF device (I use settings for both sleep and earthing - wear it in my pocket and I'm good to go) or the pose or?

There are also breathing exercises which can help but I think the pose and possibly the Vibe device are more effective at calming my system.

 

[Mary]

@Rufous McKinney - you were supposed to be tagged in the above post but I didn't do it right! so here's your tag

 

[Marylib]

It moves the entire lymphatic system.

That is the problem. They weren't coming for weight loss. So those of us who have impaired detox pathways, get really messed up there.

Haven't tried a vibrating machine, but years ago had a very good massage therapist who helped me regain motion in my arm after an injury. The follow up was a lymphatic draining massage and the effects of that were really tough...so at this point I'd rather let all that gunk stay where it is...I know someone who uses all kinds of vibrating platforms to deal with osteoporosis, but they are thankfully not a person with ME.

 

[junkcrap50]

I think this vibration therapy stuff & related things are getting this thread off topic. Surely there's another thread on that topic.

 

[Wishful]

just a garden variety crash from over-exertion even though it was the machine doing all the exerting.

I don't know how strong the vibrations are, but could they be strong enough to cause microtears in tissue, resulting in activation of the immune system? Thus not exertion, but immune activation.

 

[Mary]

I don't know how strong the vibrations are, but could they be strong enough to cause microtears in tissue, resulting in activation of the immune system? Thus not exertion, but immune activation.

That's possible. Though my PEM is generally triggered by exertion - whether physical, emotional or social - e.g., a lengthy phone call can cause me to crash, too much physical activity, once I crashed after I spent a very intense 3 hours at night watching a video lecture about cancer - it was fascinating and it took a lot of mental energy.

 

[Dude]

Pretty good interview regarding the topic of what do we do with the exhausted T cells and how do we proceed to find the trigger.

 

[Rufous McKinney]

what do we do with the exhausted T cells and how do we proceed to find the trigger.

Are there non NIH researchers who could move on pursuing this next step somehow?

 

[SlamDancin]

Are there non NIH researchers who could move on pursuing this next step somehow?

It could be relevant to the Rapamycin trial. mTOR is right there with PD-1 regulating T cell parameters including exhaustion. In one paper I read it worsened T cell exhaustion after a viral infection. I’m worried about that trial because Rapamycin regulates things at such a high level that it’s pretty much a blunt instrument. I think it could easily make some patients worse.

 

[junkcrap50]

It could be relevant to the Rapamycin trial. mTOR is right there with PD-1 regulating T cell parameters including exhaustion. In one paper I read it worsened T cell exhaustion after a viral infection. I’m worried about that trial because Rapamycin regulates things at such a high level that it’s pretty much a blunt instrument. I think it could easily make some patients worse.

I'd be interested to see the used dosage for the Rapamycin, in T-cell exhaustion & in the trial. It was my understanding, which I'm not confident I have it correct, the rapamycin trial was using low dose rapamycin, such as that used for autophagy in anti-aging. I do not think the low dose rapamycin will work to overall MECFS (I've been taking 3-6mg once weekly for about a year now and see no effect, though there are some mecfs remission stories from it) but perhaps it might work at the cellular level. Regular dose, ie high dose, rapamycin is immunosupressive. So if there is persitent pathogen stimulation, then I wonder if it'd be safe/appropriate. Perhaps a medium dose might do it.

 

[SlamDancin]

@junkcrap50 From what I was just reading mTORc2 is the more dominant controller of T cell parameters and so with higher doses of Rapamycin you get more mTORc2 activation and likely worse T cell exhaustion. It’s dicey and I would hazard to say we don’t know enough about me/cfs or mTOR’s million different connected pathways to say it’s trial ready. And like you junkcrap I tried 6mg a week Rapamycin and it was an awful, awful time . I was extremely sick going in and it may have even made me worse. Those with skeletal muscle condition underlying are probably not going to benefit from decreased protein synthesis