Letter: Could endothelial dysfunction and vascular damage contribute to pain, inflammation and post-exertional malaise in individual... (Lubell, 2022)

Consul

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Letter: Could endothelial dysfunction and vascular damage contribute to pain, inflammation and post-exertional malaise in individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)?

By Jeffrey Lubell

To the Editor,

In their hypothesis paper, Wirth, Scheibenbogen, and Paul describe how endothelial dysfunction could produce a wide range of neurological symptoms in people with ME/CFS [1]. As they and others work to refine their understanding of ME/CFS and the related Long COVID syndrome, I would encourage consideration of the possibility that endothelial dysfunction and vascular damage could also explain other symptoms, including widespread pain and inflammation and post-exertional malaise.
For the past four years, my wife and I have been caregivers for our teenage daughter, who has ME/CFS, hypermobile Ehlers-Danlos syndrome, craniocervical instability, Chiari malformation and several other comorbid conditions. Through observation and trial and error, I have developed a number of hypotheses on these matters that I offer here in the hope they might prompt formal research into how to effectively treat these conditions [2].
Link https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-022-03244-7
 
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Pyrrhus

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Thanks so much, @Consul , for posting this thoughtful letter exploring hypotheses, with a focus on the author's own daughter, which makes these hypotheses that much more concrete, albeit less generalizable!

Remember that Forum Rule #7 says that we can not violate the author's copyright by posting the entire article. We are only allowed to post an excerpt of an article, so you may want to shorten the quoted portion in your post.

Usually, the excerpt we post is just the abstract and maybe some other key sentences from the article. If the article has no abstract, then we usually post just the first few paragraphs. Hope this helps!
 

Consul

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@Pyrrhus thanks for the reminder, i have edited it.

Quite interresting that she is able to recover more quickly from PEM by manually squeezing liquid out of tissues or the lymphatic system. I dont think i have stuff like this going on myself though.

I remember the authors of the study on attention in me/cfs by Iñigo Murga et al 2021 also think that there is something wrong in the (g)lymphatic system.
 

Oliver3

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@Pyrrhus thanks for the reminder, i have edited it.

Quite interresting that she is able to recover more quickly from PEM by manually squeezing liquid out of tissues or the lymphatic system. I dont think i have stuff like this going on myself though.

I remember the authors of the study on attention in me/cfs by Iñigo Murga et al 2021 also think that there is something wrong in the (g)lymphatic system.
Ive been doing the Perrin technique..the pressure point on the nose gives really good relief to the congestion feeling in the neck.
It also changes the shape of my spine. For me part of the fight or flight is a problem with the spine it seems. I've been working for a while on building up the diaphragm. The twists involved in the Perrin technique also build the muscle and unfreeze the spine and allow me to get relax. It's pretty amazing actually.
I'm sure the spine is part of this.
But so is ehlers danlos.
I have varicose lymph and so get a lot of crap building up.
The lymph is sort to touch in places and styes have grown round these painful points.
After I got covid, the repeated flair ups, with the new swollen lymph in my neck cause sweating and anxiety.
When I move the lymph the anxiety temporarily goes.
So I'm assuming that's toxic back flow back into the brain causes this anxiety along with the frozen spine.
Added to thatz I've started supplenting with transdermal magnesium..that really helps the vein issue that I have which is awful vasoconstriction and high Bp. I can walk without the heaviness and suffer marginal pem after a twenty minute walk which I just couldn't do.
It allows me to be calm on the walk too.
I use pynagenonal for inflammation and to support the adrenals whilst using mag and b complex with potassium from food. I couldn't handle this before.
Interestingly I read that magnesium enhances nitric oxide globally in the body.
I'm also using d3 and k2 which has helped my mood.
Zinc for infection.
Aspirin if things gets bad with congestion, but between the Perrin technique and the magnesium, that horrible congestion feeling only comes up if I don't pace.
I believe the ehlers danlos part of this can be helped to some extent by the nutriceutialls...higher doses than normal for mag and if tolerated potassium and b vits.
But moving the lymph does help.
I can leave the house now and am less stuck in the fight or flight.
I'm still pretty sick but it doesn't feel so desperate
 
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I noticed I had to walk more- when I was visiting my daughter for three months. It was simply further, to reach a glass of water, or food or the refrigerator .

The swollen lymph nodes went down. that part improved.

But then I developed more intense POTS-y symptoms and in the end, it seemed I was crashed for the entire three months. Then maybe it took me six more months to get "sort of better".

You've inspired me to try more Perrin's techniques....
 

Oliver3

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Ive spent 100s of hours just lying there trying to find the root of my fight or flight. I don't know if it's the same for you but I started noticing that, even tho completely " relaxed" , on the outbreath , my fight or flight would try to ramp up.
It was coming from my spine, in the back.
What I learned from Perrin is that the sympathetic nerves are in the chest and back. So I started to think, maybe the nerves are simply misaligned...well when I did the twist Perrin suggest, my stomach and diagphram " fell" and I could breathe out of my tummy, even tho I thought I was previously belly breathing.
It really brought down the sympathetic drive.
Then the nasal release, everytime, it stops that godawful strangling congestion feeling.
What is that..any suggestions? I wonder if it's moving fascia or if Perrin is correct and I'm allowing lymph to move.
When I do the nasal thing standing, I sigh, like there's a huge relief going on and my hips move forward and my legs feel different.
I don't know what this means but it feels good.
I don't neccesarily think this is root cause. But it's REALLY helping the sympathetic drive in me.
Like I said I'm also using transdermal mag and the difference it makes to my BP is incredible....there's deffo smthg else wrong with the vasculature but for some reason those Perrin things are really helping..I had to try them for a few months off and on before I found the correct spots that work.
Maybe I'm a subtype that has spinal involvement as well as vasculature stuff
 
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Maybe I'm a subtype that has spinal involvement as well as vasculature stuff
thats very interesting...and I should look at the Perrin Technique methods to refresh my memory.

I did Tai Chi for many years. Imperfectly. Any number of basic movements associated with this, involve lifting the upper chest and twists which likely stimulate both lymphatic movement and the fascia. And feel wonderful to execute.

Like I said I'm also using transdermal mag and the difference it makes to my BP is incredible
is this lowering your BP?