ME/CFS is a mitochondrial disease

[Wishful]

Personally I have never understood that because when I have any sort of virus it makes me feel really bad and definitely not in any way better. Makes me think there has to be subsets.

I'm in your subset for that. Luckily I've only had a couple of viral infections in the last 18 years. My increase in ME symptoms lasted only a few days, as did any other symptoms from the infections.

 

[Hd-x]

The mitochondria are in a fragmented stage in ME/CFS.
It looks like the attached image, this has been figured out by Würzburg university.
Unfortunarly, the university didn´t get any single buck for ME/CFS research = so, they cant continue their work for creating any therapy or pills.
Obvisiously, it might be possible to adress the fragmented mitochondria issue to some degree with sports (+NEMs) that may trigger new (non fragmented) mitochondria, but you have to be in a state to be able to do something wihout crashing hard with PEM.

 

[bread.]

lupus is a mitochondrial disorder, like me/cfs, like probably pretty much every other chronic disease.

https://www.google.at/amp/s/m.jpost...iracle-molecule-for-fighting-Lupus-612163/amp


@Janet Dafoe (Rose49) I believe this will be very interesting to know for Dr. Ron I believe!

A mechanism like this found in Lupus would fit all the boxes of what we know about ME.

 

[Wishful]

A mechanism like this found in Lupus would fit all the boxes of what we know about ME.

The problem is, we all seem to have different collections of boxes.

My mitochondria in non-cerebral tissues seems to be working fine.

 

[SlamDancin]

@Wishful How did you determine this? For example, I have some sort of neuropathy and would like to know the state of the mito in my
distal Muscles. I’d also like to know if it’s causing a mirror response in the brain ala Dr Van Elazzakker’s work, where I definitely feel like holding my breath for a few seconds is enough
To provoke dysfunction in brain energetic demands matching peripheral blood supply to the brain.

 

[Wishful]

@Wishful How did you determine this?

Well, my strength and stamina didn't seem to change when I got ME. I seem to be able to do as much as I did pre-ME, so there doesn't seem to be any mitochondrial dysfunction in those tissues. There could be mito dysfunction in my cerebral tissues, but I don't know how to test that.

I hadn't encountered Dr Van Elazzakker’s work before. Interesting. I'll have to follow up on that more. The Japanese work on fatigue is very interesting too.

If you have reduced distal muscle strength or stamina, I can't think of a simple way to determine whether it's mitochondria or nerve signals. I just consider normal performance to be a sign of normal mito function.

 

[SlamDancin]

Well, it’s definitely not normal and I have anti-ganglioside GM2 antibodies which can indicate Gilluiane Barre syndrome but I don’t believe I have this.

Acccording to the Light group at U of U I was able to determine I may have ATP7A hereditary motor neuropathy based on my genetics. So I am armed with enough information to seek out a neurologist to start to doing nerve testing in the muscles and hopefully get some definitive readings. I definitely lost and lose muscle mass very quickly and especially in the distal areas.

I’ll report more on this as I get the actual nerve testing results. What’s so weird to me, is that while your symptoms seem to be quite different from mine, we both probably qualify as ME/CFS according to the diagnostic criteria as it is, so something is obviously not the complete picture here, right??

 

[SlamDancin]

Definitely check out Van Elazzaker. What he’s seeing in the brain after simple provocation is pretty remarkable and consistent throughout the patients. No matter what is happening distally there seems to be a mirrored response in the brain stem for some undetermined reason yet and also some real tangible problems with getting O2 and CSF moving to brain and back out, again apparently no matter what is happening distally. I don’t know if they screened out neuropathy as a precondition to be honest and I probably should get that info. Dr Van Elazzakker is pretty active on Twitter and may be more approachable that some other researchers.

 

[Wishful]

What’s so weird to me, is that while your symptoms seem to be quite different from mine, we both probably qualify as ME/CFS according to the diagnostic criteria as it is, so something is obviously not the complete picture here, right??

Absolutely. There are some very different subgroups of ME. I encounter lots of theories about what ME is, based on symptoms or responses that I don't have. My ME symptoms seem to be primarily if not entirely neurological. My guess is that much (most?) of the physical ME symptoms will prove to be downstream effects of neurological causes. If ME affects brain cells, that could quite easily affect the function of some of those tiny clusters of brain cells that control body-wide functions, which in turn would cause further downstream effects of their own. So, if your muscles aren't working properly, maybe it's due to just a small cluster of brain cells not functioning properly.

 

[SlamDancin]

@Wishful

https://www.s4me.info/threads/the-r...tions-with-symptoms-2019-ajonsjö-et-al.13063/

This new study is interesting on that note. Of all “inflammatory” cytokines and chemokines tested beta-nerve growth factor was the only that correlated with fatigue severity. Considering NGF plays a central role in both CNS and PNS repair it may show that no matter where the damage, the response in the brain (by some sort of mirror response like Dr Van Elazzakker has proposed via the vagus nerve) is the same OR you could be right and it could be originating in the brain. I think it’s becoming more and more clear that it’s at least in that area and we’re moving closer to figuring it out! Happy new years

 

[Wishful]

Whenever I consider a theory of ME, one of my main questions is: does it fit with the ability to switch from full ME symptoms to full remission over the space of minutes and then fade just as quickly a few hours later? I'm not sure how quickly NGF would work.

 

[SlamDancin]

@Wishful Well I did read that DHEA agonizes the same receptors as NGF. I take 5-6 mg of DHEA each night with Progesterone but I am now considering stopping and seeing how I feel.

I suppose taking a dose of DHEA, 10-15mg, might be enough to provoke an immediate response similar to NGF. Any experience with that steroid?

 

[Wishful]

I suppose taking a dose of DHEA, 10-15mg, might be enough to provoke an immediate response similar to NGF. Any experience with that steroid?[/QUOTE]

Nope, haven't tried it. The only steroid I tried was prednisone, which worked awesomely well (full remission, bouncing with energy) the first two times, then never worked again. It took 5 days before it triggered the first remission, 2 days the second time. The remissions faded after tapering off. *sigh* It's hard when you "Find a cure!!!!" and then have it stop working.

 

[SlamDancin]

Blessing in disguise. Corticosteroids are horrible for your long term health in so many ways. DHEA is supposed to be a glucocorticoid antagonist so should work somewhat opposite to Prednisone. That’s why it’s in my regimen but now I’m not so sure about it.

 

[bread.]

... in many but not all me/cfs patients and in in even more people with me/cfs with slow onset and EDS like features, pots and mcad ...

just wanted to put it out there and hope I will be still alive when it is proven ...

(existing mtdna studies for me/cfs are somewhat worthless for many reasons)


edit: I hope I am wrong obviously,also I am 100% bedridden for 2 years.

Getting closer to finding out:

I am still breathing, but not sure for how long at this point, hope to be around to see this come to fruition.

https://www.healthrising.org/blog/2022/04/23/mitochondrial-chronic-fatigue-syndrome/