Is ME/CFS a mitochondrial disorder?

[bread.]

I think that it is in a significant amount of people with ME/CFS. Especially in those with multiple diseases like MCAD, SFNP, EDS and Dysautonomias.

Please remember, there are no foolproof ways to diagnose mitochondrial disorders (especially secondary mitochondrial disorders, but we are also far away for diagnosing all primary genetic mitochondrial disorders) at this point in time.

Mitochondrial disorders are a group of disorders with a vast spectrum of pathologies.

Please remember that in those with diagnosed mito disease, basically all (yes, including PEM for many) symptoms that are seen in ME/CFS can be seen.

Also, Dysautonomias, SFNP, MCAD and for whatever reason even EDS are more often than not seen in these patients according to anecdotal evidence and also literature.

Thoughts?

 

[Wishful]

I think it's likely, but it may not be as simple as that. ME might be a combination of variations in various systems. Maybe to develop ME you need a specific variant of a gene, and one or more epigenetic states, and a diet with too much/little nutrient x, plus whatever else. Then all those variations work together to lock us in this abnormal state.

Personally I think the problem specifically involves microglial mitochondria, but that's from my personal observations of how tryptophan affects my symptoms, causing elevated cerebral kynurenines.

 

[southwestforests]

Can probably safely declare that mitochondria are involved and it is merely a matter of determining exactly how how the mechanics of their involvement function and where it is located on the overall spectrum of CFS/ME causes and effects.

 

[Rebeccare]

I was told that I have certain markers of mitochondrial dysfunction. I think there's a team at Baylor studying mitochondria in people with ME/CFS.

 

[pattismith]

Primary mito diseases should be be ruled out. Some patients on PR had a mito disease diagnosis.

In fact all the myopathies, either genetic or acquired, are part of the differential diagnosis of ME/CFS.

Especially the non inflammatories ones, which does not show up in usual blood screening.

Many patients here had EMG and muscle biopsy for screening for these diseases.
Other symptoms existing in some myopathies are eyelids ptosis (sometimes not obvious), and myotonia (delayed relaxation of some muscle that can be noticed at percussion).

 

[gbells]

I think that it is in a significant amount of people with ME/CFS. Especially in those with multiple diseases like MCAD, SFNP, EDS and Dysautonomias.

Please remember, there are no foolproof ways to diagnose mitochondrial disorders (especially secondary mitochondrial disorders, but we are also far away for diagnosing all primary genetic mitochondrial disorders) at this point in time.

Mitochondrial disorders are a group of disorders with a vast spectrum of pathologies.

Please remember that in those with diagnosed mito disease, basically all (yes, including PEM for many) symptoms that are seen in ME/CFS can be seen.

Also, Dysautonomias, SFNP, MCAD and for whatever reason even EDS are more often than not seen in these patients according to anecdotal evidence and also literature.

Thoughts?

No its not a mitochondrial disorder. CFS patients didn't have ME from birth, it is aquired. Second, many are triggered by a virus. At best, you could argue that it is a genetic susceptibility to a viral trigger, like an autoimmunity. However, I haven't seen a good argument showing evidence for this. ME patients have been found to have high levels of inflammatory Nf-kb, exactly what herpes viruses, borrelia (lyme) and toxoplasmosis produce. Nf-kb inhibits mitochondria and provides an excellent explanation what is going on.

 

[Hipsman]

My father thinks I have mitochondrial disorder becouse one of my grandparent has migraines, especially when he was 18 y/o. It can be past onto next generations by genetics. I don't have migraines by the way
I'm skeptical with that I have it becouse I had significant improvements that kicked in in 6mins on first use from this natural sinusitis treatment, but the improvements last for only 4-5 days, then it stops working for month or two...

Take onion juice (2 teaspoons), add oil(2 teaspoons), honey (1 teaspoon). Take a cotton swab and dip it into the ointment. Then three times a day, insert into each nostril for 6-5 minutes.

 

[Wishful]

CFS patients didn't have ME from birth, it is aquired.

Yes, but mitochondria change as we age. They develop defects, which get passed on to new mitochondria. I vaguely recall an article about them performing worse as we get older. The cells in which the mitos live change as well. So, some of us may have a predisposition to ME that gets triggered (by virus or whatever) when our mictochondria drop past a certain level of efficiency.

I don't think that ME is purely a mitochondrial disease, but mitochondrial function is quite likely a part of the core dysfunction.

 

[tiredowl]

I have pondered this as well, and you are right, there are so many similarities between mitochondrial disease and
ME.

I wish it was easy to diagnose.. anyone have problems with their eyes? I mean like eyes are kind of droopy and also extreme nearsightedness? Apparently that can be a tell sign of mitochondrial disease

 

[ljimbo423]

Thoughts?

My feeling is the mito dysfunction in ME/CFS is secondary to the root cause. Which I think is the gut. Although I'm rather confused as to how big a role the mitochondrial dysfunction plays in causing symptoms.

Jarred Younger thinks it's low grade brain inflammation causing symptoms. I get 2 types of PEM. One is what I get regularly when I physically over do it.

The other type of PEM I get feels just like the flu and that usually only happens when I have pushed myself a lot physically and only lasts 12-24 hours. So it's not an actual cold or flu.

Flu symptoms, as far as I know, only originate in the brain. So that makes me feel like the brain is very involved in causing symptoms. I get good symptom improvement from many mito supplements like BCAA's, coq10, B-1, ALA, etc.

But I think these all can get into the brain too. So i don't know if my improvement is from improving the mito function in my body, brain or both and to what degree, if it is working in both places? I don't know.

I have narrowed my search for the main causes of symptoms down to mito dysfunction and/or brain inflammation though.

 

[Rufous McKinney]

I have narrowed my search for the main causes of symptoms down to mito dysfunction and/or brain inflammation though.

My gut has been functioning at a pretty optimal level. Compared to where it was at two years ago, its like now operating at a B+ or A minus level.

Yet overall, my ME symptoms worsen. The feeling that everything is inflamed in my lower brainstem: never goes away.

 

[ljimbo423]

My gut has been functioning at a pretty optimal level. Compared to where it was at two years ago, its like now operating at a B+ or A minus level.

Yet overall, my ME symptoms worsen. The feeling that everything is inflamed in my lower brainstem: never goes away.

Do you think mitochondrial dysfunction plays a role in causing symptoms?

 

[Rufous McKinney]

Do you think mitochondrial dysfunction plays a role in causing symptoms?

For me: for at least three decades- the center of some inflammatory misery resides at the base of my skull and neck.

I know my lower brainstem is inflammed, swollen. And maybe its just the cumulative collagen loss and connective tissue decay, in my case. Compression, squeezing, more compression, more squeezing. It feels very "physical". My eyes and teeth want to pop out of their respective locations.

so the latest: how the cerebral spinal fluid is supposed to flush out our brains. That fluid contains collagen and elastin. There is collagen again.

Predisposition + virus X toxins +time= something is very wrong.

Yet still: the energy required to run the body, is in short supply. Everythign requires this energy. Maintaining appropriate gut permeability: requires this energy.

Some of this last two months of gut improvement may be because 1) I am currently in a massive resting state 2) following three months of doing too much, visiting my daughter and all symptoms got extremely worse like I was in a PEM crash for three solid months. So I think I had enough energy LEFT to repair the gut lining more than I had b efore.

 

[southwestforests]

anyone have problems with their eyes? I mean like eyes are kind of droopy and also extreme nearsightedness?

Nearsightedness since somewhere around 4th grade in the 1970s and now to a point where high density, high refraction, lenses have pretty much been a requirement for 20 years.

I'm not sure how exactly to apply the droopiness description.
It seems to be a thing on Dad's side of the family for the eyebrow skin to get loose enough in the middle age to elderly years to eventually droop enough to obscure vision and need surgical remedy.
Not yet to that point on me but clearly in progress.

Brings to mind an interesting vision thing with Dad; he was farsighted as a child, then as teen normal vision, then in college years he became nearsighted.
And remains so to this day.

 

[Wishful]

Flu symptoms, as far as I know, only originate in the brain.

Have you found anything to indicate that the symptoms are caused by something other than kynurenines? Back when I first started trying to figure out what was causing my symptoms, kynurenines seemed like the simple answer. Immune system activation -> elevated IFN-g -> elevated IDO -> elevated neurotoxic kynurenines = flu-like symptoms. I never found an alternative explanation for flu-like symptoms.

If you feel like experimenting, try eating some tryptophan-rich foods when you're expecting those flu-like symptoms and see if the symptoms are more severe. If the BCAAs work fairly quickly (within hours?), then they might be working by blocking TRP transport into the brain.

 

[Wishful]

Yet still: the energy required to run the body, is in short supply.

However, that's not the primary problem with ME, because not all PWME suffer from that. My energy seems to be the same as pre-ME. It's possible that my problems are caused by not enough ATP is some very specific type of cell (microglial or whatever), but my muscle cells are doing fine. I consider low muscle endurance to be a common, but not definitive, secondary symptom of ME.

I think my gut is working fine too. I haven't had any reason to indicate that gut function is part of the cause of my ME. I'm convinced that it's a cerebral issue.

 

[ljimbo423]

Have you found anything to indicate that the symptoms are caused by something other than kynurenines?

The thing that makes the most sense for me is lipopolysacchrides getting into my bloodstream from my gut. Which increases with activity. Causing mito dysfunction and low grade brain inflammation.

Although I can't say with certainty that is what's causing them. To be honest, I'm really open to many theories of what's causing ME/CFS.

If you feel like experimenting, try eating some tryptophan-rich foods when you're expecting those flu-like symptoms and see if the symptoms are more severe.

I actually take 80-100 mg of 5 HTP a day. It just relaxes me. I don't get a worsening of symptoms.

Even though I have a theory (basically what I wrote above), I try to stay flexible with it and open to new ideas.

 

[JES]

My feeling is the mito dysfunction in ME/CFS is secondary to the root cause. Which I think is the gut. Although I'm rather confused as to how big a role the mitochondrial dysfunction plays in causing symptoms.

Jarred Younger thinks it's low grade brain inflammation causing symptoms. I get 2 types of PEM. One is what I get regularly when I physically over do it.

The other type of PEM I get feels just like the flu and that usually only happens when I have pushed myself a lot physically and only lasts 12-24 hours. So it's not an actual cold or flu.

Flu symptoms, as far as I know, only originate in the brain. So that makes me feel like the brain is very involved in causing symptoms. I get good symptom improvement from many mito supplements like BCAA's, coq10, B-1, ALA, etc.

But I think these all can get into the brain too. So i don't know if my improvement is from improving the mito function in my body, brain or both and to what degree, if it is working in both places? I don't know.

I have narrowed my search for the main causes of symptoms down to mito dysfunction and/or brain inflammation though.

My take is it could be both a brain and a gut issue in a sense. Parkinson's disease for example most definitely goes under a brain disease, but some new research this year pointed towards a potential starting mechanism in the gut. The brain and the gut is connected through the vagus nerve as we know. If I remember correctly, Ron Davis also found a metabolite produced by gut bacteria that is almost completely absent in ME/CFS patients.

I notice temporary improvement with following actions:
-Sleep deprivation (sleeping over 9 hours makes symptoms kick in really bad in the morning). Brain issue?
-Constipation improves symptoms a bit. Gut issue?
-A flu or infection completely clears most symptoms. Immune system issue?
-Switching diet to ketogenic gave a couple of days of improvement. Mitochondria?

I couldn't be confident in saying it's the brain or gut, but what seems clearer to me is none of these temporary improvements point towards mitochondria being permanently broken, at least in my case.

 

[ljimbo423]

I couldn't be confident in saying it's the brain or gut, but what seems clearer to me is none of these temporary improvements point towards mitochondria being permanently broken, at least in my case.

I agree, that the mitochondria are not broken. My experience tells me that whatever is causing my symptoms can be reversed to a large degree.

At least from severe ME/CFS to fairly mild. Because that's what I've been able to do. I might be able to get a full remission, I don't know. I do know I'll never stop trying for a full remission.

 

[Rufous McKinney]

I try to stay flexible with it and open to new ideas.

yeah, why not? We vary so much. Its a good mental exercise to work to talk yourself out of beliefs. You never know when the next revelation may strike.

I've always felt very lymphatic. that the lymph is a core issue here, my four rounds of Mono, the presumed Chronic Eppstein Barr I used to explain, to myself, what was wrong here (since no other explanation seemed to exist, my Medically Impossible eppstein barr sufficed).

So I move slightly, in any manner (massage, the muscle vibrator, soak my feet, vibration machines everyone else is in love with; the acupuncture treatment; the physical therapist neck electrodes (muscle released some blocked lymph).... so other than the minor details in my lower brain stem and neck, this has also always been like LYMPH and it moving MAKES ME Sick.

But its not just that, I understand....and the BCAAs seem to have helped some.

(my new BCAA problem was/is I"m only getting it in once a day, and was doing twice, but I have to camoflage the awful taste and I'm putting it into a protein powder that: I apparent seem to refuse the second dose.)