mitodicure..promising or not?

[Guwop2]

I recently started following mecfs sufferer Flor on X and saw she posted this about Mitodicure, a possible treatment for PEM/MECFS. I only found one posts here tucked away in treatment section, but with few responses. This is the first time ive come across a pharmaceutical company setting up trials for a treatment, though im not so plugged into this sort of thing, so could be common. Gathering by the lack of posting about it i'm guessing it's of little interest? NHE1 inhibitor sound interesting at least.

 

[cfs since 1998]

It's unfortunate their promotional material calls it "chronic fatigue" but they will also be targeting autoimmune vasculitis and Ehlers-Danlos (among others) which indicates they are serious.

Here is a bit of discussion on s4me:
https://www.s4me.info/threads/mitodicure-gmbh-applies-for-3-patents-for-me-cfs-drugs.37970/

 

[crussher]

I think it is real-deal stuff. Mitodicure is founded by Klaus Wirth who has done a lot of trailblazing research with Carmen Scheibenbogen on ME/CFS. But the challenge is getting the funding.

Mitodicure was featured in one of the main German newspapers recently (behind a paywall unfortunately).

 

[Florida Guy]

Lets not get our hopes up that this will be the "cure" we have been disappointed many times before. But never give up hoping. Maybe it will be something that helps a certain percentage and not everyone? The problem has to involve the mitochondria, that is for sure since thats where we make our energy (atp). I would gladly try it but I'd like to hear some user reports first.

 

[gregh286]

Yeah defs it's mito issue. Too much anaerobic metabolism....not burning glucose etc. High lactic.
Looks interesting

 

[Guwop2]

I think it is real-deal stuff. Mitodicure is founded by Klaus Wirth who has done a lot of trailblazing research with Carmen Scheibenbogen on ME/CFS. But the challenge is getting the funding.

Mitodicure was featured in one of the main German newspapers recently (behind a paywall unfortunately).

So what's holding it back is simply money? I suppose investors would want assurance that the product would actually work.

 

[crussher]

So what's holding it back is simply money? I suppose investors would want assurance that the product would actually work.

It's a high risk investment (although if it did work as a treatment, and given it would be the only drug on the ME/CFS market as it were, whoever did put money in would surely make a huge return).

 

[Guwop2]

It's a high risk investment (although if it did work as a treatment, and given it would be the only drug on the ME/CFS market as it were, whoever did put money in would surely make a huge return).

ok. regardless of whether the trials are successul I would imagine they would at least learn something about the touted drug and that could inform future iterations of it.

 

[Wishful]

The problem has to involve the mitochondria, that is for sure since thats where we make our energy (atp).

I haven't checked the latest studies, but I don't recall any that clearly indicated that all PWME have lower than normal ATP production. Feeling "fatigued" does not equal a lack of ATP; there are other potential explanations.

 

[Carl]

Not helpful IMO. It's one of those treatments designed for long term treatment without actually curing anything. If it works it could be highly profitable with a growing market over the years. But as I said it's NOT a cure for anything and doesn't correct the problems in ME or Fibro and that is because it doesn't treat the cause which I know is curable. It's a lot like the new anti-obesity drugs, they don't fix the problem only treat the symptoms. The drug companies are falsifying so much information with false research hoping to stop the discovery of the cause of most human illnesses. They are all very closely linked. Meanwhile drug companies continue to make huge profits getting people onto statins and anti-obesity drugs etc.

IMO no Doctor will ever 100% cure every consequence of ME/Fibro, only the best most knowledgeable herbalists could do that. They total only 1 to my knowledge. Fix the hypothalamus, pituitary, kidney/adrenal nervous systems, repair the circulatory system and possibly heal the liver. Maybe also restore the nervous system in the spleen. Very complex but it can be done. Some of the best other herbalists can do small parts of those issues but none of them have the knowledge to do it all.

 

[Florida Guy]

Wishful wrote:
"I haven't checked the latest studies, but I don't recall any that clearly indicated that all PWME have lower than normal ATP production. Feeling "fatigued" does not equal a lack of ATP; there are other potential explanations."

Have there been any that looked for atp production and only in cfs patients? It may not be a lack of total atp production but considering that is the main source of cellular energy and me/cfs seems to involve the use of energy in our muscles and a lowered level of energy overall it must be part of the problem. It may be that our cells stop using the atp available or arent able to use it efficiently. So it could be a lack of atp, it could be and probably is something more complex involving the use of energy

So we either are not producing enough energy or we aren't able to use the energy properly that we do have. Lactic acid seems to often build up. Its like the body switched over to a less efficient way of using the energy from food. If the body can go from normal to that abnormal condition, it must be possible to reverse it

If this stuff works, I don't care if you have to take it every day, it will be a good thing. It will be expensive no doubt, and not likely to be a long term cure from taking it a short time. But, if it actually does reverse the exercise intolerance, pem, etc so that people can go out and work, play, go to the gym, socialize without symptoms, its worth whatever it costs. But some patients will have to pass it by if the cost is too high.

 

[Carl]

Wishful wrote:
"I haven't checked the latest studies, but I don't recall any that clearly indicated that all PWME have lower than normal ATP production. Feeling "fatigued" does not equal a lack of ATP; there are other potential explanations."

Have there been any that looked for atp production and only in cfs patients? It may not be a lack of total atp production but considering that is the main source of cellular energy and me/cfs seems to involve the use of energy in our muscles and a lowered level of energy overall it must be part of the problem. It may be that our cells stop using the atp available or arent able to use it efficiently. So it could be a lack of atp, it could be and probably is something more complex involving the use of energy

So we either are not producing enough energy or we aren't able to use the energy properly that we do have. Lactic acid seems to often build up. Its like the body switched over to a less efficient way of using the energy from food. If the body can go from normal to that abnormal condition, it must be possible to reverse it

If this stuff works, I don't care if you have to take it every day, it will be a good thing. It will be expensive no doubt, and not likely to be a long term cure from taking it a short time. But, if it actually does reverse the exercise intolerance, pem, etc so that people can go out and work, play, go to the gym, socialize without symptoms, its worth whatever it costs. But some patients will have to pass it by if the cost is too high.

Carnosine helps eliminate lactic acid and Histidine is needed for Carnosine production. However Histidine is also needed to produce Histamine which many have problems with so it could be that all Histidine is going towards Histamine production leaving insufficient to produce Carnosine. There are some meats such as Chicken breast and Turkey breast plus some other meats which can prevent Carnosinase enzyme from breaking down Carnosine and they also contain another compound called Anserine with a strong antioxidant and Carnosine like activity which is not broken down by the enzyme and it also helps to prevent Carnosine from being eliminated by the enzyme. Anserine is present in chicken, turkey, duck, rabbit, tuna and salmon.

I did also come across something which might have some meaning. I don't know where I saw it unfortunately. I only have a short note with a

Carnosine “increases the energy output of the mitochondria” - check for research showing this

That might be a small contributing factor in the whole picture. High levels of histamine production from histidine leaving little for Carnosine production which affects muscles via failure to remove lactic acid. I never checked for research on that and don't have time ATM.

 

[Wishful]

me/cfs seems to involve the use of energy in our muscles and a lowered level of energy overall it must be part of the problem.

My point was that the feeling of lowered energy or strength and stamina limitations could be caused by factors other that ATP production. It could be an inability to utilize ATP, but it could also be neurological: interference in the signals that make muscles work and the signals sensing how the muscles are working.
We don't yet know why we have those feelings, so it's too early to say that lowered energy must be part of the problem. I haven't seen any clear evidence that PWME feel weak or lethargic because of low ATP production (or utilization).

 

[Florida Guy]

My point was that the feeling of lowered energy or strength and stamina limitations could be caused by factors other that ATP production. It could be an inability to utilize ATP, but it could also be neurological: interference in the signals that make muscles work and the signals sensing how the muscles are working.
We don't yet know why we have those feelings, so it's too early to say that lowered energy must be part of the problem. I haven't seen any clear evidence that PWME feel weak or lethargic because of low ATP production (or utilization).

But, pwcfs are weak and tend to be lethargic which is evidence of low energy. We can debate the reasons since the exact cause has not been pinned down. But a lack of energy is clearly present, I think we could agree on that. When a car does not have any power and moves slowly, we look at the engine since that is where power is generated. It may be the engine isn't working properly, it may need a tune up. It may be there is something wrong with the fuel or the spark, the transmission must also work to send power to the wheels.

The human body is much more complex than an auto so we have many more things to look into. But, we have a clear situation in which energy is created in mitochondria and is used by the muscles to do work. But the body is sluggish and can't go fast or may have a breakdown (pem). It is clear the nervous system is involved but to what degree we don't know. Looking into energy production and use is the obvious place to start. Injections of atp are reported to make patients feel better, that is strong evidence pointing toward atp and its use in the body

 

[Florida Guy]

I recommend nmn which is nicotinamide mononucleotide, It helps your mitochondria. I've been taking it for over a year and it makes me feel better.

 

[ruben]

Not helpful IMO. It's one of those treatments designed for long term treatment without actually curing anything. If it works it could be highly profitable with a growing market over the years. But as I said it's NOT a cure for anything and doesn't correct the problems in ME or Fibro and that is because it doesn't treat the cause which I know is curable. It's a lot like the new anti-obesity drugs, they don't fix the problem only treat the symptoms. The drug companies are falsifying so much information with false research hoping to stop the discovery of the cause of most human illnesses. They are all very closely linked. Meanwhile drug companies continue to make huge profits getting people onto statins and anti-obesity drugs etc.

IMO no Doctor will ever 100% cure every consequence of ME/Fibro, only the best most knowledgeable herbalists could do that. They total only 1 to my knowledge. Fix the hypothalamus, pituitary, kidney/adrenal nervous systems, repair the circulatory system and possibly heal the liver. Maybe also restore the nervous system in the spleen. Very complex but it can be done. Some of the best other herbalists can do small parts of those issues but none of them have the knowledge to do it all.

Are there any such herbalists in the UK does anyone know?

 

[Wishful]

But, pwcfs are weak and tend to be lethargic which is evidence of low energy.

No, the same perceived symptoms could be neurological, with no lack of ATP in the body. Muscles can "feel weak" because of a problem with the muscles, or it could be because of how the brain interprets signals from sensors in those muscles, or it could be because some other part of the brain overrides that interpretation (hypnosis is one example). Without supporting evidence, it's too early to claim that the "lack of energy" is due to a specific cause, such as ATP levels in muscles. We need more data.

 

[cfs since 1998]

The proposed treatment is more complicated than just trying to increase ATP levels. This drug will either work or not work, and this will be evidenced by clinical trials.

 

[Guwop2]

I wrote to them asking about whether crowdfunding their work would be helpful in accelerating the process and received this response in case anyone is interested:

The development of a new innovative drug is a lengthy and risky process, and unfortunately we are only in the preclinical phase. Our financial requirements to start the first studies on patients are in the low double-digit million range, which means that only professional investors or very wealthy private individuals in a consortium can raise the necessary funds. In order to keep the number of participants in this consortium manageable, our current plan is that private individuals should contribute around 1 million euros or more for equity in Mitodicure.

Up to now, we have only briefly reflected about considering crowdfunding. Why?

As said pharmaceutical development is very expensive, risky and takes years – meaning after the first funding round you have to start thinking about the next. Often crowdfunding is perceived as negative signaling by professional follow-on investors and certain rights, e.g., liquidation preferences, that follow-on investors want to take from prior investors they cannot take from crowdfunding investors. Regulators protect them considering them as a kind of not so well informed, wide public.

We also believe that the private VC markets and the public sector have a certain obligation to provide financing. Taking money from a broad mass of patients for a potential drug now that will not be approved for many years seems ethically inappropriate to us, especially as many patients have to pay for their own symptomatic treatments. We will first try to exhaust all other sources.

Maybe in half a year our crowdfunding position needs to change in order to not give up the project.

 

[ChrisD]

Any thoughts on natural NHE1 inhibitors? Very intrigued as to whether there are natural compounds that can achieve similar to MCD002