ME/CFS is a mitochondrial disease

[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.

 

[SlamDancin]

Are you a fan of the Lights work at the U of Utah? Many different ATPases had genetic variants compared to healthy controls. Myself included and it actually led to me diagnosing an underlying neuropathy that I believe was causing ME and CFS quite literally by causing CCI/AAI and then the resulting CFS. Like Jen Brea or Jeff.

 

[borko2100]

It's a plausible option. Even though, the fact that many people experience temporary remissions, for example when having a cold, suggests otherwise. A doubt that a true mitochondrial problem could fix itself just like that.

On the other hand, I wonder how many of those remissions are actually true remissions? Meaning, not just disappearance of symptoms and energy to do basic stuff, but also recovery of normal exercise and endurance capacity.

Me, personally. I've had temporary remissions from symptoms, but I don't ever recall feeling like I have the exercise capacity, endurance and stamina of a regular person.

So maybe, your theory might be correct after all.

 

[bread.]

It's a plausible option. Even though, the fact that many people experience temporary remissions, for example when having a cold, suggests otherwise. A doubt that a true mitochondrial problem could fix itself just like that.

On the other hand, I wonder how many of those remissions are actually true remissions? Meaning, not just disappearance of symptoms and energy to do basic stuff, but also recovery of normal exercise and endurance capacity.

Me, personally. I've had temporary remissions from symptoms, but I don't ever recall feeling like I have the exercise capacity, endurance and stamina of a regular person.

So maybe, your theory might be correct after all.

those patients with remission are not people with an insidious onset from my experience. (no data)

 

[borko2100]

those patients with remission are not people with an insidious onset from my experience. (no data)

So, your theory only applies to people with insidious / gradual onset? What leads you to believe, mitochondrial problems only apply to insidious onset sufferers?

 

[JES]

The reported temporary remissions are not exactly strong evidence, curious as they are. However, Ron Davis has observed the same effect in ME/CFS cells behaving more normally following infection, which is a bit stronger evidence. The strongest evidence for some kind of signaling problem is probably the experiment Davis group performed some time ago, where they swapped ME/CFS cells with healthy plasma and ME/CFS plasma with healthy cells. As we now know, it turned out the plasma was the factor which made cells misbehave, ME/CFS cells in healthy plasma behaved close to normal, whereas healthy cells in ME/CFS plasma showed the same abnormal response.

 

[bread.]

So, your theory only applies to people with insidious / gradual onset? What leads you to believe, mitochondrial problems only apply to insidious onset sufferers?

they do not, but they are more likely to deal with mito issues, in adults with mitochondrial disease (there are hundreds of different mito diseases, so it is difficult to generalize) is a mostly slowly progressing disease ... most people never felt „ok“, always had issues of some kind, with infections etc.

 

[Wishful]

Me, personally. I've had temporary remissions from symptoms, but I don't ever recall feeling like I have the exercise capacity, endurance and stamina of a regular person.

My temporary remissions made me feel more energetic than pre-ME. They had me bouncing with energy. ME never decreased my strength, stamina or endurance; my symptoms seem to be neurological. If my ME does involve mitochondria, I suppose it's possible that it's only affecting the mitochondria of my brain cells (there are differences in the DNA between the two types).

 

[borko2100]

My temporary remissions made me feel more energetic than pre-ME. They had me bouncing with energy. ME never decreased my strength, stamina or endurance; my symptoms seem to be neurological. If my ME does involve mitochondria, I suppose it's possible that it's only affecting the mitochondria of my brain cells (there are differences in the DNA between the two types).

Wow. Then our disease profile is completely different. Neuro issues are a huge problem to me. But the thing that defines my illness is inability to produce sustained energy. 10 minutes on the bike and I'm dead. 2 minutes running, same thing, etc. Try to improve stamina gradually? Impossible, I've tried it.

As many have noted, there's probably subsets of this illness.

 

[Wishful]

Yes, definitely different subsets. Others have reported the 'no physical problems' form of ME, which makes me think that the physical problems are likely a common secondary symptom of ME, but not part of the core problem.

 

[Rufous McKinney]

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

Hanson's group just published info on issues with mitochondrial energy production in certain T cells in pw ME.

https://www.nih.gov/news-events/news-releases/study-finds-differences-energy-use-immune-cells-me/cfs

Perhaps this is not what you mean by mitochondrial disease.

Also I'm curious if you can elaborate on what you mean by insidious, slow onset. Does that mean...as in my case...I was first documented with Eppstein Barr 56 years ago. I was able to work full time and function in some alternate capacity that now, in the last three years, has worsened substantially.

 

[Hopefulone]

Perhaps this is not what you mean by mitochondrial disease.

Damaged mitochondrial is certainly possible, but I don't know if it can be defined as a mitochondrial disease. My current view is that ME/CFS is caused by an infection such as the Epstein Barr virus (EBV). In certain people, it is unable to be fully overcome by the immune system and goes on to cause serious but subtle damage to a number of different areas including the mitochondria.

Therefore, I have been taking resveratrol supplements for some time now. Apparently, it may help to repair damaged mitochondria and could be beneficial in other ways.

You may be interested in reading about what happened to me, although this is not about this topic. Please see: https://forums.phoenixrising.me/threads/fatigue-continues-to-diminish.77862/ and https://forums.phoenixrising.me/threads/could-it-work-for-anyone-else.77895/

 

[percyval577]

Mt in CFS have actually been found to be in an especially good condition, there is low heteroplasmy (Billig-Ross et al 2016), and there are an excess of ppl with me/cfs WITHOUT mild deletrious variants (Venter et al 2019).

They itself also work fine. -- After all they might be cared for especially well in ME/CFS, why?

Gathering of some literature on mt in cfs: mitochondra-in-me-cfs.78406/

 

[percyval577]

I also see no nessecarity to blame an energy issue for feeling weak.

Wow. Then our disease profile is completely different. Neuro issues are a huge problem to me. But the thing that defines my illness is inability to produce sustained energy. 10 minutes on the bike and I'm dead. 2 minutes running, same thing, etc. Try to improve stamina gradually? Impossible, I've tried it.

As many have noted, there's probably subsets of this illness.

Crtically I would answere, that by no means a feeling asures that the felt thing is wrong, it could be a damage on the side on the feeling-it-thing.

This even were to ease the task in finding out what´s wrong, b/c there is in fact no doubt that the ability to process informations is affected (too). It could be the same thing only in another respect. Also nice would be that this might shed light on the unknown structure responsible for all the mess.

 

[keenly]

ALL diseases no genetic are mitochondrial.

 

[bertiedog]

Even though, the fact that many people experience temporary remissions, for example when having a cold, suggests otherwise.

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.

Pam

 

[bertiedog]

But the thing that defines my illness is inability to produce sustained energy. 10 minutes on the bike and I'm dead. 2 minutes running, same thing, etc. Try to improve stamina gradually? Impossible, I've tried it.

I am coming into my 20 th year of being unable to exercise for more than 20 minutes on average non stop and this includes gentle walking. In all these 20 years I have NEVER been able to walk for more than 30 minutes maximum even when I am feeling quite good.

Pam

 

[Pearshaped]

Imagine it is a mito -desease or issue..
would it change our situation? mito desease is difficult to treat,isn't it?

One of my docs suspected I have a mito issues and has sent all my labwork to a specialist in this field.
Specialist said the metabolic issues in my case are probably a consequence of my illness.My doctor told him he thinks its the other way round.this route is a dead end..

 

[ljimbo423]

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 think the mito. issues are secondary to the immune activation and oxidative stress from that immune activation in ME/CFS.

ME/CFS researcher Mady Hornig has a video out of her work. She shows that people with Irritable bowel syndrome (IBS) and people without it, have very different cytokine profiles. Because they both have different forms of bacteria causing their dysbiosis.

She suggests that the different types of bacterial dysbiosis in those with and without IBS in ME/CFS, are causing stimulation of different immune cells and therefore different cytokine profiles.

This could be the reason for the different cytokine profiles found in ME/CFS and why some of us feel better with a cold or a flu and some of us feel worse.

 

[bertiedog]

This could be the reason for the different cytokine profiles found in ME/CFS and why some of us feel better with a cold or a flu and some of us feel worse.

That's an interesting theory Jim and yes I have watched some of her presentations and found them very interesting. As usual time will tell!

Pam