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Is ME/CFS a mitochondrial disorder?

Davsey27

Senior Member
Messages
514
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.

interesting Rufous.Curious if there is anyway to run tests on the lower brain stem and if this is a cause what the treatment would be?

thanks
 
Messages
25
interesting Rufous.Curious if there is anyway to run tests on the lower brain stem and if this is a cause what the treatment would be?

thanks

@Rufous McKinney Are you following all the CCI+ conversations and looking into a possible mechanical compression issue in yourself? The popping eyes feeling sounds like Intracranial Hypertension, which can be dangerous and I think caused by some different brainstem/c-spine problems. Def worth getting some MRIs done and properly evaluated by Me-literate neurosurgeons, imho.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I actually take 80-100 mg of 5 HTP a day. It just relaxes me. I don't get a worsening of symptoms.

Ah, but 5-HTP doesn't convert into kynurenines. About 5% of TRP in the brain gets converted to 5-HTP and then serotonin. Most of the rest gets converted down the other pathway, which includes the neurotoxic kynurenines. 5-HTP will help me sleep, but doesn't affect my ME symptoms. TRP does affect my ME symptoms. So, if you want to test whether kynurenines are involved in your symptoms, try TRP rather than 5-HTP.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
The thing that makes the most sense for me is lipopolysacchrides getting into my bloodstream from my gut. Which increases with activity.

What's the timing on that? If it's a consistent 24-hr delay, as mine is, IFN-g (from damaged muscle cells) and IDO is a more likely explanation. I don't think the release and reaction to LPS would have that sort of consistent lengthy delay.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
What's the timing on that? If it's a consistent 24-hr delay, as mine is, IFN-g (from damaged muscle cells) and IDO is a more likely explanation. I don't think the release and reaction to LPS would have that sort of consistent lengthy delay.

It's a consistent 48 hour delay and it's very rare that my PEM lasts more than 12-24 hours.

So you don't think the mitochondria play a big role in symptoms?
 

Rufous McKinney

Senior Member
Messages
13,251
Def worth getting some MRIs done and properly evaluated by Me-literate neurosurgeons, imho.

I'd like to get this figured out. The path to do that is murky.

Explaining the Mechanical Basis, to ones' Doctor, who cares, and diagnosed me with SEID; and who does not watch movies, and he thinks Stanford fixes people. ...I'm showing him my missing fingerprints and talking about necks.

there is some way. There is some path forward. I need more flashlights.
 
Messages
25
I'd like to get this figured out. The path to do that is murky.

Explaining the Mechanical Basis, to ones' Doctor, who cares, and diagnosed me with SEID; and who does not watch movies, and he thinks Stanford fixes people. ...I'm showing him my missing fingerprints and talking about necks.

there is some way. There is some path forward. I need more flashlights.

You may already know about this, but there's a new (2nd gen) ME/CFS+ facebook group for ME folks exploring CCI etc dignoses that is aiming to add flashlights to the journey. :) You can find it here: https://www.facebook.com/groups/1353765701467793/
 

Rufous McKinney

Senior Member
Messages
13,251
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.

Today my IBS-d somewhat returned, and thats irritating. But provides me with these observations...

1) this change is not due to gut micro-organisms.....they just don't change in 24 hours.

2) its not the food I ate: I ate exactly the same thing as the day before.

3) the PEM i'm experiencing from overdoing three days ago, likely resulted in 1) triggering more lower brain stem inflammation which then spoke to the gut; and/or 2) the energy required to maintain appropriate gut permeability became lacking...defences dropped.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Today my IBS-d somewhat returned, and thats irritating. But provides me with these observations...

1) this change is not due to gut micro-organisms.....they just don't change in 24 hours.

This study shows that the microbiome in ME/CFS does change significantly after an exercise challenge-

Upon exercise challenge, there were significant changes in the abundance of major bacterial phyla in the gut in ME/CFS patients not observed in healthy controls.

What you are experiencing though, could be from brain stem inflammation as we have seen in Jeff and Jen.

Do you think the mitochondria have a role in causing symptoms?
 

Rufous McKinney

Senior Member
Messages
13,251
Do you think the mitochondria have a role in causing symptoms?

Well, Yes. But this is the If You Think You Know, Think Again disease.

At night, this inflammation reduces substantially and I experience a fair amount of relief from my miserable daytime symptoms. That occurs due to THC.

My comment at item 1) was based upon my having NOT exercised. The PEM was from two days prior and wasn't due to exercising...it was anxiety, stress, talking and lymph moving.

Lets just continue to wear blindfolds, and stumble about in darkness. This is so lame, when evaluated with a few molecules of thought.

Why can't we monitor our own gut flora? We can go to Mars?
 

Rufous McKinney

Senior Member
Messages
13,251
This study shows that the microbiome in ME/CFS does change significantly after an exercise challenge-

So I re-examined that abstract.....and the graph. More details, not possible at the moment.

It looks like what is changing during the course of hours post exercise, is the relative abundance...and it differs in healthy controls.

Gut creature A did not disapppear, to be replaced by Gut Creature B. (I think that is in fact what I meant about it can't change that much in 24 hours. )

Given the rapid reproductive rate of bacteria, changes in abundance could occur fairly rapidly.

Well, if the cognitively impaired have to come up with our own cure, well, good luck to self.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
It's a consistent 48 hour delay and it's very rare that my PEM lasts more than 12-24 hours.

So you don't think the mitochondria play a big role in symptoms?

To me the 48 hr delay strongly suggests t-cell activity. When I developed type IV delayed food sensitivity at the start of my ME, it was a 48 hr delay +/- a few minutes. I asked an immunologist whether the body has other systems capable of such a precise and consistent delay, she said she didn't know of any, and that it was clearly a t-cell disorder. I wouldn't be surprised if your IFN-g rose abruptly 48 hrs after your activity. Is mitochondrial dysfunction involved in that? Dunno for sure, but I do believe that they are involved in some way.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
1) this change is not due to gut micro-organisms.....they just don't change in 24 hours.

The relative abundances may change in that time, but I have trouble believing that those changes will be consistent with exercise, but not change in similar ways from eating something different, or spending more time laying on your stomach, or all the other things we do during a day that don't trigger PEM. My physically-induced PEM correlates with straining my muscles beyond their usual limits, so I believe that the immune system activation from damaged muscle cells is the trigger. Multi-hr hike: no PEM. Few minutes washing a window or climbing a ladder: PEM. That doesn't seem to fit the 'altered gut microbiome' hypothesis.

The altered gut microbiome may correlate with PEM for some people, but maybe the gut alteration triggers the immune system, which in turn triggers PEM.
 

Rufous McKinney

Senior Member
Messages
13,251
The altered gut microbiome may correlate with PEM for some people, but maybe the gut alteration triggers the immune system, which in turn triggers PEM.

Yes, I understand you have this particular version of this...which seems different. I appreciate that you seem good a teasing these things out.

I somehow feel rather cloddish, about figuring things out. Like I'm not that good at detecting subtleties in dosages, timings, I'm frequently perplexed by the immense detail others can provide.

However: at this moment I just seem to have come out of the 72 hour PEM window, and its quite obvious at this moment. So this morning- a bunch of Yuck was far less Yucky. Its backing off.

And I also think I exacerbated my eye problmes which were bad last week, because I read 48 pages of the DMV manual. I have to keep reading it to pass the test next week.

A single maddening aspect of this is: knowing the 72 hour thing, how does one schedule appointments, necessary appointments to try to make more progress on this Ditty; HOW?

tomorrow i have a dental appointment. friday somebody is stopping by to help me. Monday is the Doctor. Friday the PT.....WHEN DO WE RECOVER????????
 

belize44

Senior Member
Messages
1,662
I have recently gotten the results of a cheek swab test that revealed defective Mitochondria. Doc has me on supplements, and hopefully my insurance will quit f@#@#ing around and pay for the test, which was a couple hundred dollars. Nevertheless, I am so glad to finally have concrete proof to what has been making me feel so ill!