$8 Million Clinical Trial of a Mitochondrial Booster Underway in ME/CFS

[hapl808]

Over the last month, my high BP converted to Good BP and I"m not sure what just happened.

One of my big frustrations with these symptoms is that when they improve or get worse, I often don't know the cause. My heart rate is almost always high (maybe 100 while relaxing and watching TV). Yet maybe once every month or two I'll feel different and look at my HR and it'll be 70. I track what I eat every day, every supplement I take, even how much time I spent on the phone, when I slept, etc. Every year I'm tracking more health parameters but making minuscule gains.

 

[VisualEffect]

Can someone explain the term "mitochondrial" disease? Does it mean that cells in the muscles aren't working properly and not producing energy? And can person acquire mitochondrial disease? I thought it can only be inherited from parents. I'm asking because ME/CFS can't just show up (without trigger) as many genetic diseases do. I think, without defined subtypes (which can overlap!), ME diagnosis is useless. There can be many diseases, including mitochondrial, and symptoms will match to the ME/CFS criteria.
Sorry but I'm tired that doctors and researchers are 'overusing' the term ME/CFS. Mestinon already has been trialed in dysautonomia conditions many times. Trying to explain fatigue with low oxygen in the muscles (so Mestinon can improve blood flow in the muscles), seriously? Lost all hope in modern medicine. So short-sighted.

 

[Rufous McKinney]

And can person acquire mitochondrial disease?

from some past reading, my sense is that we have genetic disorders which affect mitochondria. and those are considered mitochondrial diseases.

I'm recalling how the doctors in Italy were all pediatricians dealing wiht metabolic diseases..(had something to do with looking at us).

so ours is something bothering the mitochondria, later on, not since birth

 

[Wishful]

My guess is that even if the drug does what they hope it will do, it would only treat some symptoms from a subset of PWME, but the brainfog, PEM and other symptoms would remain. Mitochondrial problems in ME are probably a downstream effect that not all PWME suffer from.

Still, any treatment that is studies for ME has a chance of learning something new about the disease.

 

[Marylib]

Not sure what to think. I don’t have high hopes. It’s always the same. Some news come out making me hopeful and after a short time reality kicks in and I’m back to square one. Feeling doomed forever. Sorry about being emotional, just learned that my ex who left me when I became sick is with another person now. Long Covid took everything from me.

@Boba - hope you don't feel the need to aplogize for being emotional. You are allowed - we get it. That really sucks about your ex. Many of us have been in that boat, so you are not alone.

 

[Pearshaped]

Getting the mitochondria back to function won’t help with the something in the blood… That’s what my fear is.

I think that too, but whatever helps a bit is welcome ! And my hope is that one study enables the next to take place and so on and so forth.. also we can be hopeful that more insights are getting us closer to helpful treatment and recognition.

 

[Rufous McKinney]

I know we all want the cure.

Its likely far more realistic to feel better by taking something which helps us feel less wiped out.

Wish some Italian mitochondrial doctors would show up and help us!

 

[keenly]

Our mitochondria power our bodies. This is an objective fact. So what powers our mitochondria? Not supplements. We did not evolve with supplements.

Sunlight is number 1
Cold therapy
Earthing

Animal fats which build exclusion zone water.

 

[keenly]

Getting the mitochondria back to function won’t help with the something in the blood… That’s what my fear is.

Your mitochondria power everything. You can breathe and think because your mitochondria power you.

ANY disease which is not genetic(only 1%) has mitochondria involved. That is axiomatic.

 

[Wishful]

Sunlight is number 1

How does sunlight power our mitochondria, aside from indirectly through the food chain? Red light can improve function, but doesn't convert ADP into ATP.

Earthing doesn't convert ADP into ATP either.

Chilling a person won't convert ADP into ATP either.

What powers the conversion of ADP into ATP is food molecules and oxygen. A sugar or fat or AA molecule has higher chemical energy than the oxidized products.

 

[BLZIN]

I'm too tired to keep up with PR, but I need to state here that I used an experimental PPAR Delta agonist (GW501516/Cardarine) in 2017/2018. I had almost unbelievable improvement of my symptoms in a short time. I discontinued use due to the risk of cancer. The story of what led me to use this substance is long. I can give more details later, but I had already published my case here in PR. Since then I have been following the PPAR Delta agonists that are being developed for various diseases. Unfortunately, there are none approved as drugs yet. As the years went by I started to be suspicious of my vivid improvements: no case similar to mine and no in-depth content on this subject has come up. As I recall, there is only discussion here in PR about antiviral properties etc. of PPAR Delta agonists, included GW501516. This news now posted on helthrising about this research with PPAR Delta agonist bocidelpar has rekindled my hopes. Could this finally bring us back from the ashes? I'm cautiously hopeful...

 

[mitoMAN]

I'm too tired to keep up with PR, but I need to state here that I used an experimental PPAR Delta agonist (GW501516/Cardarine) in 2017/2018. I had almost unbelievable improvement of my symptoms in a short time. I discontinued use due to the risk of cancer. The story of what led me to use this substance is long. I can give more details later, but I had already published my case here in PR. Since then I have been following the PPAR Delta agonists that are being developed for various diseases. Unfortunately, there are none approved as drugs yet. As the years went by I started to be suspicious of my vivid improvements: no case similar to mine and no in-depth content on this subject has come up. As I recall, there is only discussion here in PR about antiviral properties etc. of PPAR Delta agonists, included GW501516. This news now posted on helthrising about this research with PPAR Delta agonist bocidelpar has rekindled my hopes. Could this finally bring us back from the ashes? I'm cautiously hopeful...

May I ask how severe you are and how drastic the improvements were ? What. Was the dosage? 10? 20mg?

 

[Pyrrhus]

I used an experimental PPAR Delta agonist (GW501516/Cardarine) in 2017/2018. I had almost unbelievable improvement of my symptoms in a short time. I discontinued use due to the risk of cancer. The story of what led me to use this substance is long.

Thanks for sharing your experience @BLZIN !

I can give more details later, but I had already published my case here in PR.

Do you have a link to your story regarding PPAR Delta?

 

[Canned]

„The subset of ME/CFS patients that could potentially be helped, if this trial works out, is not small. Systrom stated that the 1,500 invasive CPETS he’s done over the years suggests that 20-25% of ME/CFS patients have enough problems with oxygen uptake to at least meet the criteria for the study.“

20-25% is not very much but maybe this is the way to go.. identifying subgroups and find drugs based on previous research.

One of my social media friends took part in that trial. He just finished all the treatment and testing. No changes and no improvement... of course there is a good chance, that he is in the placebo group. That’s what he thinks as well.

 

[mitoMAN]

„The subset of ME/CFS patients that could potentially be helped, if this trial works out, is not small. Systrom stated that the 1,500 invasive CPETS he’s done over the years suggests that 20-25% of ME/CFS patients have enough problems with oxygen uptake to at least meet the criteria for the study.“

20-25% is not very much but maybe this is the way to go.. identifying subgroups and find drugs based on previous research.

One of my social media friends took part in that trial. He just finished all the treatment and testing. No changes and no improvement... of course there is a good chance, that he is in the placebo group. That’s what he thinks as well.

Are you sure the took part in Bocidelpar trial? I thought they were still in recruiting phase but maybe clinical trial data is outdated

Study is planned to finish May 2023

I have only found three ME/CFS patients yet that trialed the comparator compound Cardarine and all three had mild to significant improvements.
Ofc 3 patients is not a good input.

 

[Canned]

I have only found three ME/CFS patients yet that trialed the comparator compound Cardarine and all three had mild to significant improvements.
Ofc 3 patients is not a good input.

Mhh interesting. Maybe we all have oxygen uptake problems to different degrees and would also profit from enhanced fat burning..but for the trial they only recruited patients where it’s significant.

Are you sure the took part in Bocidelpar trial? I thought they were still in recruiting phase but maybe clinical trial data is outdated

Not 100% but it was the same hospital and the friend also linked corts article and basically said, that’s the trial he participates in.

 

[mitoMAN]

Mhh interesting. Maybe we all have oxygen uptake problems to different degrees and would also profit from enhanced fat burning..but for the trial they only recruited patients where it’s significant.



Not 100% but it was the same hospital and the friend also linked corts article and basically said, that’s the trial he participates in.

Does he know the dosage they were supposed to be given ? Because that's still not posted on the clinical trial site

 

[mitoMAN]

If he wants I can send him a lab in USA that can do NMR on the pills he received so he can find out if it's placebo or not for around 80$
He would need to sacrifice 1 pill

 

[Canned]

Does he know the dosage they were supposed to be given ? Because that's still not posted on the clinical trial site

I’ll ask.

If he wants I can send him a lab in USA that can do NMR on the pills he received so he can find out if it's placebo or not for around 80$
He would need to sacrifice 1 pill

Mhh it would be very interesting to know for sure but that doesn’t seems right.. im not even sure if it is allowed to post about it on social media

 

[mitoMAN]

Yeah he would not be allowed to post he got a placebo for sure lol.
Probably not allowed to say anything at all