Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated

[andyguitar]

It's way more complex than just oxygen delivery.

Yes there probably are other things going on that might be revealed in a patients medical history.

But like I say, there's many people with anxiety disorders that don't have m.e.

From having read countless post here over years it seems to me we have a fairly mixed bag of people here. Some do have anxiety which is not suprising as being ill is a stressful situation to be in.

To have drugs that give us relief would be great.

Well they authors of this paper suggest Mestinon and Vericiguat. So just taking those 2 drugs could be a solution. Easy to find out if it works.

 

[Oliver3]

Lastly as Andy said, it could be a ge etic mast cells problem

 

[Oliver3]

Yes and sadly I know people who've taken those drugs to no avail..
Yes,indeed, it's more than one expression of the same disease. Like breast cancer is nine diseases.

But like I said hbot would be a cure if this was the case.

Have you heard of Dr afrin? He says 80 percent of what we call m.e. is a mast cell disorder

 

[Mary]

My former medical advocate tried to get me on Mestinon, but I couldn't get any doctors to buy in, much less consider any of my theories, despite providing supporting documentation.

@Wayne did a post about using Huperzine A in place of Mestinon - it's quite informative:
https://forums.phoenixrising.me/thr...ke-to-show-benefits.92385/page-2#post-2465212

@Wayne did (does?) well with Huperzine A. I gave it a try and did not react well to it unfortunately! It's one of the cheaper supplements, however, so might be worth a try for you.

I later discovered that Aricept is a cholinesterase in inhibitor, like Mestinon and Huperzine A. My mom was given Aricept for dementia (non-alzheimer) and did horribly on it, it made her tired, ruined her appetite, and a few other things. Anyways, this perhaps explains a little why I did badly on a cholinesterase inhibitor, but many do well on it.

About vitamin D - might it be possible to apply it topically and increase your absorption that way?

 

[andyguitar]

Yes and sadly I know people who've taken those drugs to no avail..

 

[andyguitar]

As the above shows we will have a clinical trial of Vericiguat, aim is to complete it in March 2025. Being done at the same hospital the papers authors work at. 104 subjects. Had a look on the web and have'nt found anyone who has tried it for me/cfs.

 

[andyguitar]

As the above shows we will have a clinical trial of Vericiguat, aim is to complete it in March 2025.

Tried to get a link to the trial details but failed. So if anyone wants to read the whole thing put this into Google NCT05697640. Enjoy!

 

[Oliver3]

View attachment 55126

Sorry mestinon...deffo took that and it didn't work.

 

[Oliver3]

As the above shows we will have a clinical trial of Vericiguat, aim is to complete it in March 2025. Being done at the same hospital the papers authors work at. 104 subjects. Had a look on the web and have'nt found anyone who has tried it for me/cfs.

I will deffo go private and try these if the trials come through with good results

 

[sb4]

. In my view, the sympathetic drive in m.e. is trying to compensate for this lack of blood delivery.

I hold the same opinion. The only issue is why does my body compensate with bounding pulse and everyone elses doesn't. Like they get POTS instead. I get both.

 

[Oliver3]

I hold the same opinion. The only issue is why does my body compensate with bounding pulse and everyone elses doesn't. Like they get POTS instead. I get both.

It's a good question. I have a few theories for myself.
We have quite severe mcas is a possibility.
We have weaker vascular tissue. We could have EDS. When the body tries to compensate. We feel it
We are closer to adrenal fatigue than most and our bodies are really trying to compensate.
We have an unfortunate cluster of nerves
Our vascular system is attacked by auto antibodies.

Personally I think it's the vascular integrity being put into stress

 

[sb4]

@Oliver3 Interesting theories. What do you mean by an unfortunate cluster of nerves?

I'm trying to square this against those who also got chronic bounding pulse from having a bad trip or a panic attack. That doesn't really fit with the above. That implies that there brain got rewired in a certain way.

I'm thinking that the initial viral onset could have caused a stress response in such a way to rewire my ANS to be more inclined to be in this constant mode. Then you add in the above + viral persistence causing issues with vascular integrity and that completes the loop of activating ANS and bounding pulse.

 

[Oliver3]

@Oliver3 Interesting theories. What do you mean by an unfortunate cluster of nerves?

I'm trying to square this against those who also got chronic bounding pulse from having a bad trip or a panic attack. That doesn't really fit with the above. That implies that there brain got rewired in a certain way.

I'm thinking that the initial viral onset could have caused a stress response in such a way to rewire my ANS to be more inclined to be in this constant mode. Then you add in the above + viral persistence causing issues with vascular integrity and that completes the loop of activating ANS and bounding pulse.

If you go on say a fibro forum there's loads of people with this symptom who are normal women usually
I very much doubt they took drugs. It's some kind of pain sensitization. Or it's actually a problem with the vasculature.

I have a friend with heds. I don't make the diagnostic criteria but he has all the symptoms I have including the bounding pulse.

Hi really don't think it's anything to do with your trip.
There's so much more dangerous stuff accumulating in our bodies like heavy metals and plastics.

We may have an over expression of nerves in our or attached to our vascular system


But the wires thing is due to the inflammatory process as much as anything. Like I say..when I take black seed , that bounding stops immediately
.for two minutes!!
But like I say, too worried about the side effects.

People do get injured by psychedelics...but me and you have the same issue and I haven't taken psychedelics . Neither has my friend with heds.
Is there any heart disease or allergy issues in your family?

There's an allergy specialist in Nottingham who deals with MCAS. Since COVID, she's stopped taking on new clients.

I think there's one type of mast cell problem that's only inherited down the male line.

If the mast are dwvranulating in our vascular system, let's say because environmental triggers have sensitized us then we will need help.
But it's interesting that many people with long COVID developed mast cells issues

 

[sb4]

@Oliver3 I tried black seed oil once recently thanks to your posts but it gave me diahrea and I didn't notice much change in symptoms. I plan to try again when my overall symptoms have settled more.

It's interesting people with fibro have this. I do agree that pain sensitization could be somewhat the cause but I also believe that my pulse is physically bounding. This is a video I took recently of my stomach / aorta:

https://photos.app.goo.gl/s7gDFoG3Cu58g9R69

So the heart is actually beating very hard and my arteries are actually pulsating. My whole body is always vibrating like this to some extent.

I should make it clear, I wasn't the one whose onset was from a bad trip, that's just a couple other people I've been talking to. My onset was infectious disease.

I wonder if it's possible that our blood vessels are excessively lax due to collagen issues and that means they stretch more with each heart beat meaning the heart has to pump harder and thus we get this visible pulsation?

 

[Oliver3]

I don't drink it..I rub it into my skin..but that's a Shane. Just shows how we are all different

 

[Oliver3]

Do you have an tuition snthgs wrong with your collagen?
It could be that the veins have collagen issues for sure. That said I know 90 year olds that don't feel this.
Have you been tested for EDS. What did your docs say about the pulsing?
There's always the possibility that you ( and me) have an arterial impingement, like in eagle syndrome or nutcracker syndrome

 

[Oliver3]

I agree that it may be we don't have a strong collagen formation but I know people older and frailer that do t have this....it's a bit of a mystery

 

[sb4]

Have you been tested for EDS. What did your docs say about the pulsing?

No, mum and brother are double jointed a bit though. My skin used to tear easily.
Docs blow it off as anxiety, hyper vigilance, unimportant.

There's always the possibility that you ( and me) have an arterial impingement, like in eagle syndrome or nutcracker syndrome

Yeah that's definitely a possibility.

I agree that it may be we don't have a strong collagen formation but I know people older and frailer that do t have this....it's a bit of a mystery

I know, a lot of this doesn't make sense. Heart failure patients don't feel this, even patients with water hammer pulse apparently don't feel this

One of the guys on discord showed me his echocardiogram results and nothing was amiss. It makes no sense since the heart should be beating harder, higher stroke volume or something.

If my heart is beating hard enough for my whole body to be constantly vibrating then why is stroke volume not high, why isn't the left ventricle enlarged?

 

[Oliver3]

Have you ever noticed how a real high fat meal can temporarily stop the pulsing ( as long as you're not reacting to the food) and as long as you don't just gorge.
Maybe in essence it's just not enough energy?
I deffo think compression syndromes need to be looked at in m.e.
Most docs are still a joke in terms of knowledge aren't they?

 

[Oliver3]

No, mum and brother are double jointed a bit though. My skin used to tear easily.
Docs blow it off as anxiety, hyper vigilance, unimportant.

Yeah that's definitely a possibility.

I know, a lot of this doesn't make sense. Heart failure patients don't feel this, even patients with water hammer pulse apparently don't feel this

One of the guys on discord showed me his echocardiogram results and nothing was amiss. It makes no sense since the heart should be beating harder, higher stroke volume or something.

If my heart is beating hard enough for my whole body to be constantly vibrating then why is stroke volume not high, why isn't the left ventricle enlarged?

What's your bp like? Have you had a full cardiac work up to rule stuff out.

Also, and I'm not suggesting it is psychosomatic, because it's not, but have you ever had a fear of your veins and the heart.

The reason I ask is because I believe m.e. sufferers have an almost supernatural degree of sensitivity to stimuli.
Mt half brother can see the flashes that a long tube light gives off.
If I go from a lot room to a darkish halflit room, I feel like I'm falling.
It's not anxiety...it's hyper sensitivity..
Unhelpfully, I think m.e. is a selection of everything we've talked about.

I'm totally with you tho. The