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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Curious about mitochondria...

ppodhajski

Senior Member
Messages
243
Location
Chapel Hill, NC
"The findings strongly suggest that oxidative stress plays a significant role in the pathophysiology of CFS and that antioxidants could be useful in the treatment of CFS."

Playing a "role" does not equate cause.

so do you just ignore the role it plays or do you dig deeper? When all these studies point to oxidative stress don't you think it in fact has a starring role?
 

ppodhajski

Senior Member
Messages
243
Location
Chapel Hill, NC
I wasn't aware that you made this claim. Thank you, I will ignore you in this case.

Why? You do not believe that I am better? Do you want to see my medicare card to see that I am still on/ but getting off of disability? Do you want to see my 500 pages of medical records? Do you want the other person to email you personally so you have her story as well?

Are you really that hopeless?
 

Valentijn

Senior Member
Messages
15,786
Why? You do not believe that I am better? Do you want to see my medicare card to see that I am still on/ but getting off of disability? Do you want to see my 500 pages of medical records? Do you want the other person to email you personally so you have her story as well?

Are you really that hopeless?
If you actually believe that you have the cure, find a way to get it published, or at least talk to some of the experts.

At this point I can only assume that you have no idea what ME/SEID actually is, and have taken some supplements which help with your fatigue or other health problems.
 

ppodhajski

Senior Member
Messages
243
Location
Chapel Hill, NC
If you actually believe that you have the cure, find a way to get it published, or at least talk to some of the experts.

At this point I can only assume that you have no idea what ME/SEID actually is, and have taken some supplements which help with your fatigue or other health problems.

My mother had disabling ME/CFS and was in several studies including one at the Mayo Clinic. I also was diagnosed CFS. This is not some "help" I gave myself. I have zero symptoms and zero side effects. I know this is a large thing to say but I feel I am the point where I can say it. And please stop making assumptions and ask questions.

I do not run off half cocked so I was working with others to make sure I am right. As far as publishing, really? Lack of credentials does not mean lack of knowledge or insight, but lack of credentials will not get you published.

Instead of just doubting what I say why don't you let me see your genetics and show you what I mean?

And if you could point me to an expert I will be glad to talk with them.
 

Valentijn

Senior Member
Messages
15,786
My mother had disabling ME/CFS and was in several studies including one at the Mayo Clinic. I also was diagnosed CFS.
Mayo wouldn't recognize ME/SEID if it jumped up and bit them in the nose. Quite recently they were still encouraging people who they diagnosed with it to check themselves into their in-patient psychiatric ward.
I do not run off half cocked so I was working with others to make sure I am right.
So do you believe that you'd made sure that you're right, or are you still at the half-cocked stage? If you've made sure that you're right, why haven't you published yet so that others can evaluate your work and supposedly benefit from it? If you're still half-cocked, why are you selling your theories as fact?
As far as publishing, really? Lack of credentials does not mean lack of knowledge or insight, but lack of credentials will not get you published.
I said nothing about credentials. Proper scientific work should be able to stand on its own merit. You don't need a degree for that, but you do need a coherent and solid research paper with relevant data to substantiate your claims.
Instead of just doubting what I say why don't you let me see your genetics and show you what I mean?
Partially because I don't trust you with mine or others' genetic data or other personal information. But mostly because we've had hundreds of people come by with "the cure" who also had no idea what they were talking about, no understanding of ME/SEID, "cures" which most of us had already tried without benefit, and an excess of confidence in their own theories.

You haven't given a clear account of what you believe ME/SEID to be and your understanding of genetics is extremely basic and often wrong. You haven't given anyone a reason to trust you, and you've provided some excellent reasons to distrust your conclusions.
And if you could point me to an expert I will be glad to talk with them.
I'm sure you can google most of them for their email addresses... unless you don't know who any of the experts are, which would be a rather startling oversight for someone purporting to cure a disease.
 

cman89

Senior Member
Messages
429
Location
Hayden, Idaho
@Valentijn - I read a paper that fibro is often passed to children by the mother, bu not the father. Trying to find it on pubmed now and will post a link if I succeed.



I came across this in googling my haplogroup - apparently it's HIV-resistant. Neat - but more interesting for us, it may be related to ATP and ROS generation. Maybe a red herring but enough to make me wonder!
Mitochondrial DNA is passed on via the mother. Dad aint involved on that one, so yes, problems with that DNA would be maternal.
 

Eeyore

Senior Member
Messages
595
@ppodhajski @Valentijn

ppodhajski - If in fact you understand the genetic causation of ME, and can explain it from any promethease report, that would be a huge discovery.

I think the test would be this: If I gave you 10 promethease files, 5 of whom have ME, 5 of whom are healthy controls, can you successfully classify them based on the genetics alone?

If so, then I will be very impressed. I think it's more likely though that you are able to spot some supposed risk factors in any given promethease file that would also be present in many healthy controls.

Even if you could list an algorithm for genetically ruling out ME in patients, that would be incredibly useful.

Any test should be something you can describe clearly in writing and should be repeatable by others, so you should be able to explain what you are looking for in the promethease files.

I have some very strong suspicions about roles of some genes in the pathogenesis of ME, but I don't think that it's a completely homogeneous disease or that it can be predicted with certainty from a single 23andme dataset, or even a complete genome sequence. No one has yet described any genomic test that either rules out or rules in all ME patients.

Furthermore, there have been several twin studies in ME. In many cases, one twin gets ME, and the other does not. Thus, genetics is clearly not the only relevant factor. I do think there is a predisposition, at least in some cases, but that is true of many illnesses. e.g. There is a form of colorectal cancer that is largely caused by the APC gene (not 100%, cancer always requires a random event, whether in the most or least predisposed to it). Most colorectal cancer, however, is not connected to the APC gene. So some people are born with a high risk for it, and others with a low one - but neither is a guarantee of outcome.
 

SOC

Senior Member
Messages
7,849
@ppodhajski @Valentijn

ppodhajski - If in fact you understand the genetic causation of ME, and can explain it from any promethease report, that would be a huge discovery.

I think the test would be this: If I gave you 10 promethease files, 5 of whom have ME, 5 of whom are healthy controls, can you successfully classify them based on the genetics alone?
Even better, I'd like to see him distinguish ICC-defined ME patients from patients with chronic fatigue as a result of other conditions if he claims his cure is for ME/SEID rather than generalized fatigue.