differences between severe ME and mitochondrial disease

[Luxintenebrislucet]

differences between severe state and mitochondrial disease
recently, after 18 years with this disease, I have entered a state different from any previous state
I have had many crashes, but this is different.
I am 41 years old.
I officially suffer from POTS, autoimmune SFN (unfortunately untreated: I was treated with immunoglobulins for a while but for a few years now I haven't been able to find a doctor in Germany who wants to prescribe them for me). For an immunoabsorption, if I were to raise the 20,000 euros, I am on a Bell scale that is too low; the minimum in Germany is 30 on the Bell scale: that would wash away the autoantibodies that attack my small nerves.
Hashimoto's, early menopause, gastroparesis, neurogenic bladder, GERD, in short, all the things we develop as a consequence of ME!
An inherited thrombophilia (this is not a consequence of ME!) I take anticoagulants.
Suspected EDS.
CCI
MCAS, severe multiple chemical sensitivity.


My new symptoms are weakness in the eyes, blurred vision, muscle weakness, shortness of breath, feeling winded, and an extreme exacerbation of the feeling of having ‘acid’ in the muscles. Severe gastroparesis ( i take mestinon and prucalopride but its just getting worse and worse ) . Dizyness and lightspots in my eyes.
Currently, despite all my efforts, as I don't want to lose condition (what little I had), I am 100% bedridden and so exhausted that I can't even listen to podcasts, read, or watch a film.
I know that severe and very severe ME conditions lead to death. I have already lost many friends in this community and I am realistic: you don't usually get out of this condition once you are in it. I have more or less accepted my possible soon death and it does not cause me grief or martyrdom, but relieve: but I wonder if I don't have some neuromuscular disease or mitochondrial disorder, which is not ME?
In my test of how my mitochondria work, a catastrophe has come up. Is it typical of EM that our mitochondria don't work? I have heard that it is not a mitochondrial problem per se and the tests tend to come back fine.
I look forward to your answers and as always, I appreciate your being here. In all these years, just reading in these forums has helped me immensely, as well as meeting other people with my disease. I don't know what I would have done without this community.

 

[linusbert]

opinions go wide range in this forum as research isnt conclusive.

i believe its a syndrome with different causes leading to mitochondrial dysfunction which presents that way.

others believe its a sick-response-switch not turned off in brain or somewhere else in the body.

and many more theories.


but mitochondrial dysfunction mustnt come with immediate damage, you can interrupt the metabolism and impair functioning of mitochondria and after the block is lifted they just go on fine. it might be damage acrued over time which makes the mitochondria really go broken.
also it mustnt be directly the mitochondria, it could be any other bodily facility which provides ressources to mitochondria which fails.

there is something called heteroplasmy. its basically how the body maintains its mitochondria, how it duplicates and how it gets rid of bad copies. if heteroplasmy is bad, the bad mitos will prevail over the good ones, so you will have over time more and more bad ones - simply put.
can also be the other way around, so that the damaged ones will be sorted out and only the good ones proliferate... that can be one of those miracleous cures which happen after decades after the body sorted it out.

grok puts it this way:

Okay, imagine your body is like a big toy factory, and inside every toy, there are tiny power batteries called mitochondria. These batteries help the toys work properly. Now, heteroplasmy is when some of these batteries are normal and some are broken in the same toy. The broken ones can cause problems, like making the toy act funny or not work right. In our bodies, when mitochondria are mixed like this—some good, some bad—it can make us sick because they don’t give our cells the energy they need. That’s how heteroplasmy can cause trouble!

Imagine those tiny power batteries (mitochondria) again. When some are broken and causing trouble, we can’t just swap them out like in a toy. Scientists are still figuring out how to fix this, but here’s what they’re trying:

1. Healthy Boost: They might try to help the good batteries work even better, so the broken ones don’t cause as many problems. This could be through special foods or medicines that give your body more energy.
2. Cleaning Up: There’s a cool idea where they try to get rid of the broken batteries by helping the body clean them out, leaving more of the good ones behind.
3. New Batteries: In some cases, scientists are working on ways to add brand-new, healthy batteries to replace the broken ones. This is super tricky and still being tested, like a science experiment!

For now, doctors mostly help by treating the symptoms—like tiredness or muscle problems—to make you feel better, while researchers keep looking for a big fix. It’s like patching up the toy until they can build a perfect one! Does that make sense?

so heteroplasmy can be tested in gene panels. i happen to be bad with heteroplasmy. i also have sod2 homozygote which is potential for mito damage. when bad genes mix up and a few too many bad factors appear like a virus infection, things can go broke.

from my nebula panel:

 

[Zebra]

My new symptoms are weakness in the eyes, blurred vision, muscle weakness, shortness of breath, feeling winded, and an extreme exacerbation of the feeling of having ‘acid’ in the muscles.

disease or mitochondrial disorder, which is not ME?

First of all, I am so very sorry to hear that you have hit a new low.

I feel like a lot of us on PR have worsened in the last two years and we are having a hard time supporting each other like we used to.

In any case, you posed the question, could you have a primary disease other than ME/CFS (or in addition to ME/CFS), and my opinion is YES!

Your symptoms, which I cut and pasted above, remind me of Myositis.

There are at least a dozen different types of Myositis, some of which affect the eyes, peristalsis of the digestive tract, respiratory muscle weakness, and even lung disease.
It can also cause a burning/aching sensation in the muscles.

In the United States, myositis is usually diagnosed and treated by rheumatologists, although testing is often done with co-operation of a neuromuscular specialist.

BTW: you do not need to have a positive ANA for Myositis, but you do need Myositis antibody panel, NCS/EMG, and usually a muscle biopsy.

I feel for you, because it doesn't sound like you are able to seek medical care right now. But maybe when you are able you can read up on Myositis and see if it resonates with you.

Wishing you improved health!

P.S. the preferred treatment is IVIG

 

[Dude]

Hello,
I know exactly how you feel—something very similar just happened to me.

But first, let me reassure you: dying from ME/CFS is extremely rare. Most cases of death related to this illness are due to malnutrition.

I’m also sliding from moderate to severe. Exactly six months ago, I was too weak to even go to the bathroom. I lost 14 kg because I was constantly nauseous. I had every symptom imaginable—muscle weakness, heart palpitations, reflux, pain, anxiety, insomnia, and who knows what else. I couldn’t use my phone because even reading worsened my symptoms. So I spent nearly two months lying in a dark room with an eye mask, just barely existing.

But that was exactly what my body needed. Slowly, things started improving. I could spend some time on my phone again, and each month, I felt a tiny bit better. The most important thing was stopping the crashes and practicing strict pacing every single day. I organized everything around my bed so that I needed as little energy as possible to get things done. I’m still bedridden, but I feel much better than I did six months ago, and I truly believe I can get back to the moderate stage.

What also helped me were recovery stories like this one:
https://www.reddit.com/r/cfs/s/baCYlJeAOZ

Regarding your MCAS, what has helped me immensely is a combination of antihistamines:

-Ketotifen 1 mg (1-0-1)

-Desloratadine 5 mg (1-0-0)

-Famotidine 20 mg (1-0-1)


However, it can take 6–8 weeks before you notice any effects.

As for a theory about the root cause of ME/CFS—contrary to what many in this forum believe about viral persistence or an overactive immune system, I consider all of that nonsense. In my opinion, the Wirth/Scheibenbogen theory is the most convincing hypothesis we have about this illness. And even though a potential treatment is still about six years away, it’s at least a small glimmer of hope.
https://onlinelibrary.wiley.com/doi/10.1002/jcsm.13669

Wishing you all the best—don’t lose hope! I know how hard this is, but things can get better!