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I will say it again, it is a mitochondrial disease.

Rufous McKinney

Senior Member
Messages
13,171
They clearly state the lymphocyte death rate can be used to diagnose ME.

So we have yet another diagnostic.

Who exactly is it that- decides we still don't get diagnoses?

Who "officially annoints" this diagnosis and what IS IT we wait for?

What doctors are experts on mitochondria?
 

JES

Senior Member
Messages
1,318
If it's a mitochondrial disease, high-dose mitochondrial supporting supplements (antioxidants, CoQ10, PQQ, etc.) should be a treatment prescribed for everyone with ME/CFS. These supplements are now even being recommended by traditional medicine doctors for treating mito diseases. In ME/CFS, mitochondrial assisting supplements don't seem to do much. It actually was the single most disappointing treatment for me along with methylation, I even got worse from high-dose antioxidants.
 
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Rufous McKinney

Senior Member
Messages
13,171
In ME/CFS, mitochondrial assisting supplements don't seem to do much.

So your saying you tried these and they did not help?

I struggle with determining if anything works. I don't know why I am so- erratic...or unable to notice subtle changes from taking a particular supplement.

I have trouble swallowling alot of pills and dont want to. I read that the cysteine I got for the mitos, is in fact a detox agent and I decide may be to cease releasing toxins....cause my stomach and IBS got worse after the flu..the flu threw everything off..its weeks later.

PQQ was there...I took it a few times..I Notice Nothing. THen its gone because my husband takes EVERYTHING constantly X 10. He just lives on pills and I"m pill-averse.

I stopped the BCAA's that seemed to help. My stomach filled up one day and never emptied and that was in there..now I don't want the BCAAS.

WAs doing baking soda also, then stopped. I told myself it was helping. Then I tell myself its causing gastroperesis.

:bang-head:
 

JES

Senior Member
Messages
1,318
So your saying you tried these and they did not help?

They either did not help or made me worse. I went through most of the methylation and mitochondrial assisting programs around seven years ago back when they were discussed a lot here on PR. Almost every antioxidant, including a much hyped CoQ10 form called MitoQ, made me worse and I end up with much increased flu-like symptoms within a couple of days.

I read that the body and immune system needs a certain balance between antioxidants and free radicals in order to function optimally and it seems in a whacked state like my body is, any antioxidant will push the balance towards the wrong direction. I have contemplated that I should try something like MitoQ for a longer period, say half a year, and see if I eventually get past the malaise, but I can't really afford to risk these kind of experiments when I'm supposed to (still) hold a job...

Anyway, when a supplement makes me worse, I have never noticed it would stop making me worse and improve my condition months later, so I hear you, it's a struggle to find out what helps you unless you notice the effect straight away.
 

borko2100

Senior Member
Messages
156
We found that results from three different tests, lymphocyte death rate, mitochondrial respiratory function and TORC1 activity could each individually serve as biomarker with better than 90% sensitivity but only modest specificity vís a vís healthy controls.

However, in combination they provided a cell-based biomarker with sensitivity and specificity approaching 100% in our sample.

So they are implying that applying a combined diagnostic test can yield almost perfect classification accuracy. Isn't that too good to be true?

If it is then this is a game changer. Being able to be diagnosed would increase the credibility of ME/CFS as a serious disease tremendously.
 

ryan31337

Senior Member
Messages
664
Location
South East, England
So we have yet another diagnostic.

Who exactly is it that- decides we still don't get diagnoses?

Who "officially annoints" this diagnosis and what IS IT we wait for?
This is only one study, published by one group, on a small number of patients. The results might be stated confidently by the authors but it means very little to anyone, until it is not only replicated but also found to be useful. Its completely normal to have countless studies making grand claims that turn out to be irrelevant, even plain wrong.

EDIT: Should also add, this is not peer-reviewed yet either, for whats its worth (not a lot in my experience!)
 

ryan31337

Senior Member
Messages
664
Location
South East, England
So they are implying that applying a combined diagnostic test can yield almost perfect classification accuracy. Isn't that too good to be true?

If it is then this is a game changer. Being able to be diagnosed would increase the credibility of ME/CFS as a serious disease tremendously.
Perfect classification accuracy for what though? This could be a fairly common finding in any number of diseases that they haven't currently tested this method on.

Even if the result is specific to Canadian Consensus Criteria ME/CFS patients, they state in the paper that these patients included those with co-morbid POTS. POTS can be caused by many different underlying disorders. Systrom et al are demonstrating secondary mito issues in POTS patients in their research, perhaps this finding better reflects POTS than CFS/ME...

Far too much uncertainty to take anything away from it at this stage really.
 

bread.

Senior Member
Messages
498
The research is worthwhile as it might be useful in making a accurate diagnosis @bread. but it's a bit of a stretch to look upon it as proof that me/cfs is a mitochondrial disease as the mito abnormalities might be a result of the illness, not the cause.

you are not treating a cause, you are treating a state of illness.
 

bread.

Senior Member
Messages
498
If it's a mitochondrial disease, high-dose mitochondrial supporting supplements (antioxidants, CoQ10, PQQ, etc.) should be a treatment prescribed for everyone with ME/CFS. These supplements are now even being recommended by traditional medicine doctors for treating mito diseases. In ME/CFS, mitochondrial assisting supplements don't seem to do much. It actually was the single most disappointing treatment for me along with methylation, I even got worse from high-dose antioxidants.

They also do not much or nothing at all in diagnosed mito disease, complete misconception.
 

bread.

Senior Member
Messages
498
For people who are severe there is a high chance that they have a mitochondrial disease, either primary or secondary. It is so obvious.
 

mariovitali

Senior Member
Messages
1,214
I will agree with @ryan31337 . Since I have been using. Machine Learning for quite some time , the numbers are good on terms of predictive accuracy but we are not sure what exactly we predict.
I would expect to use the same test between cohorts of patients with another mitochondrial disorder (for example) and MECFS patients and see what results we are getting.

We have a long way to go
 
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ryan31337

Senior Member
Messages
664
Location
South East, England
For people who are severe there is a high chance that they have a mitochondrial disease, either primary or secondary. It is so obvious.
It may play a part, but its not any currently identifiable or well understood classic mitochondrial disease - there has been enough research previously to exclude those.
 

bread.

Senior Member
Messages
498
It may play a part, but its not any currently identifiable or well understood classic mitochondrial disease - there has been enough research previously to exclude those.


Another misconception. There is no such thing as a well defined mitochondrial disease, that is an undisputable fact.

Every expert will tell you that the mutations we know in mtdna and dna that are (!! not in everybody !!) causative for mitochondrial disease do not even scratch the surface, new mutations are found on a monthly base! Nearly all diagnostic instruments for mito disease lack sensitivity and specificity! There is heteroplasmy of mitochondrial dna everywhere in the body.

The little research that has been done regarding mitochondria in me/cfs patients in poorly defined patient subsets is almost worthless.

Me/cfs ist not about fatigue, it is about a lack of energy! People need to wake up! It is incredibly complex but we have to start working on it NOW.
 

andyguitar

Moderator
Messages
6,578
Location
South east England
Me/cfs ist not about fatigue, it is about a lack of energy!
When people are at their worst @bread. it's not that they lack energy. They maybe unable to move at all. Like being paralysed. If, when in that state, it was a 'lack of energy' dont you think that their major organs would fail? And how about times before they became ill but became very,very tired. They may have lacked energy but could still move. Now they cant. Exertion in many cases = a state similar to paralysis. Why not consider the possibility that part of the problem is that something is blocking the action of the neurotransmitter that enables muscles to work normally. That neurotransmitter is Acetylcholine.
 

Rufous McKinney

Senior Member
Messages
13,171
Now they cant. Exertion in many cases = a state similar to paralysis. Why not consider the possibility that part of the problem is that something is blocking the action of the neurotransmitter that enables muscles to work normally

I"ve experienced a type of paralysis...during some acute ME episodes...where the symptoms are all intensifying and its scary has heck.

Hip flexors- paralyzed one block from my apartment.

Arm can't lift the towel. Instruction...lift towel...nothing happens.

Body can't avoid an obstacle in its path.

Brain can't process visual inputs.

But then I can also experience extreme PEM from not moving what so ever at all and there seem to be no muscles involved.
 

HABS93

Senior Member
Messages
485
When people are at their worst @bread. it's not that they lack energy. They maybe unable to move at all. Like being paralysed. If, when in that state, it was a 'lack of energy' dont you think that their major organs would fail? And how about times before they became ill but became very,very tired. They may have lacked energy but could still move. Now they cant. Exertion in many cases = a state similar to paralysis. Why not consider the possibility that part of the problem is that something is blocking the action of the neurotransmitter that enables muscles to work normally. That neurotransmitter is Acetylcholine.
That's a very interesting take. I've tried neurotransmitter fatigue drug user for sleep disorders called modafinil. Instead of feeling more natural amount of energy it was more like my body was holding my eyes open and didn't sleep the entire night . Along the lines of blocking neurotransmitters could be cyctokines which can enter the BBB and disrupt nerutransmitters.
 

Rufous McKinney

Senior Member
Messages
13,171
I've tried neurotransmitter fatigue drug user for sleep disorders called modafinil.

I took 1/2 a dose of modafinil.....and did not like how I felt- and my eyes did feel strange...I slept ok that nite ..but then proceeded to get severe flu 24 hours later...weeks have since passed. Bad coincidence.

I am frankly afraid to take it again. Head ache. But promised my doctor I would.


Do you want to feel more awake, and alert, when body is awash in Sickness Behavior? I don't seem to want to be more alert...