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SS31 / Elamipretide

Discussion in 'Other: Methylation; B12; Glutathione; GcMAF' started by Badpack, Jan 25, 2020.

  1. Badpack

    Badpack Established Member (Voting Rights)

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    So after the study phase 3 for primary mitochondrial myopathy sadly failed, this wont come to the market any time soon. But im still very interested in trying it for science. I found a link on alibaba ( https://www.alibaba.com/product-det...539.html?spm=a2700.9099375.0.0.7c114e598NZNGr ), but it kinda feels very risky. Its graded only as cosmetic grade (i guess its because of legal reasons) and in powder form. In the study they used 40mg subcutaneous. I know it sound very dangerous and wild but if anyone of you got some ideas/tips how i can realise it, please go for it. I imagine asking the inventor/producer wont help much because of legal reason they wont provide it as long as studies are being done.
     
  2. alex3619

    alex3619 Senior Member (Voting Rights)

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    I would be careful about endorsing this both because of the medical risks, and also the legal risks. Cosmetic grade SS31 is far too much an unknown at this point.

    What I will say is that SS31 is very promising. I also want to say that in studies some of the effects we expect are also being achieved by another substance, a natural substance, that is one of my favourite supplements. Resveratrol. We need a thread on that.

    I only just found out that in mice its nearly conclusively shown that resveratrol stops very bad diet, as in both high carb and high fat, from causing cardiovascular plaque. I gather human research shows similar findings but less conclusively.

    Resveratrol has two sources, and is over-the-counter-ready at low price. Its been used a long time with no obvious safety risks. It has personally saved my life many times over, a story I have discussed elsewhere.

    In the last day I found at least one scientist is now taking resveratrol in high doses (one gram, which is really just a small speck) with a fatty meal, as its fat soluble not water soluble. Personally I found 600mg effective for my past needs, and I was very overweight.

    Resveratrol is a powerful antioxidant. That, however, is probably one of the least of its benefits. It changes molecular switches which move the body toward better health in a myriad of conditions. There are at least three such switches, though the one that got me interested is it blocks an enzyme called phosphodiesterase 4. This is why I have not died from severe bronchospasms.

    Its a legal and available supplement. Right now.

    I am very eager to see more SS31 research, especially following the OMF in vitro finding that it reverses one ME biomarker. I would like to back more research. I would be interested in participating in clinical studies. I might even donate to hasten such studies ... we want results yesteryear, not in some hypothetical future. However I will not try cosmetic grade SS31, ever.

    I am about to start taking resveratrol daily, as opposed to a maximum of twice a week. I might also increase my dosage. I am making big changes, trying to recreate my 1999 shotgun protocol, but bypass the brutal side effect. That protocol rapidly got me from barely able to walk to walking five continuous hours a day, every day, at a very brisk pace ... with lots of energy to spare. I just ran out of time in the day for more walking. Resveratrol, and my other current interventions, were not part of that original protocol.

    I am not just side-railed by my declining health, and my current efforts, but exhausting legal issues and tragic family issues. If anyone would like to start discussing their resveratrol experience and the science on another thread I would appreciate it.

    So if anyone wants to spend money on SS31, I think it would be better served donating that money to OMF research, including on SS31.

    Meanwhile we might benefit from looking more closely at known SS31 biochemical findings. That is something that can be done here on this thread, and educate all of us.
     
    Last edited: Jan 25, 2020
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  3. Badpack

    Badpack Established Member (Voting Rights)

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    I took resveratrol for 2 months in high doses and it did nothing for me. Nothing good, nothing bad. So i stopped it.

    Nothing against Ron and OMF, i already donated to them 2 times now. But i think at their current speed it will take them 50 years and we wont see progress in ron's lifespanne. Rons talks about his impedance measurements for 5 years now. And all he did was measure 10 ppl more. No other diseases, no big numbers. Its just way to slow. So i want to act and just go for it. It feels better than just waiting in my bed 24/7 doing nothing and waiting for my life to go by.
     
    Last edited: Jan 25, 2020
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  4. alex3619

    alex3619 Senior Member (Voting Rights)

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    Hi, I don't think resveratrol is a cure of ME. At all. I do think its a part of improving our biochemical balance. The minimum effective dose I found for myself was 600mg at a time. What do you call a high dose? Currently some are taking a whole gram. Many tabs currently have more or less about 100mg.

    I am also taking resveratrol for reasons other than ME. In at least mouse studies it prevents plaque cardiovascular damage from diet. Its expected it will also be that way for humans, but we do need more research.

    I understand wanting to try things. I understand developing protocols to do something, anything. I have done it myself. I am doing it now. I do think that we need to be careful about the unknown though. Its a very big gamble. When we are close to the edge, rolling the dice for a full cure is much less likely to eventuate than falling off that edge into deeper trouble. Caution is warranted. There are more, and less, safe ways to approach that. One of those was built into my shotgun protocol, which I call pyramid dosing. However to do that we need to have strong information on maximum safe dosage. We don't have that for SS31.
     
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  5. Badpack

    Badpack Established Member (Voting Rights)

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    My point of view is, every medicine known to mankind today, has probably been tested by an ME sufferer in one way or another in all these years of neglection. So im interested in new medical ideas that can be tried. Such as SS31 which also made a good impression in Rons impedance device. I tried Rituximab and plasma exchange and many more things. So im not afraid to risk it for a potential benefit.
     
  6. alex3619

    alex3619 Senior Member (Voting Rights)

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    Yes, and no. Hence my shotgun protocol from 1999, though I worked on it for much of 1998.

    We have tried just about every available drug, treatment, vitamin, mineral or herb. For sure. What we have not done exhaustively is try every combination, every protocol, every dosage, and every interaction.

    Maybe this would be a good place to discuss my old shotgun protocol. Its not about taking this and that at such and such a dosage. Let me elaborate.

    1. I figured out every substance or method that has relative safety and might help.
    2. I figured out the maximum safe dosage or treatment limit.
    3. One by one, I started at a very low dose and every several days I increased the dose by one increment, usually one tab for a supplement.
    4. I noted if I felt better. If I did, I decreased the dose one step. That is the possible start dose. If I didn't I increased the dose.
    5. If I reached maximum safe dose or any limit of tolerance without benefit, I decreased the dose to minimum. I wanted to keep these in the protocol in case they might have an effect I could not detect.
    6. At the end I combined them all and started taking them. A few weeks later my energy was completely restored.

    So what went wrong?

    1. The plan was to reiterate this process with the final protocol, so I could test how these interacted. Many nutrients work in combination. For example, vitamins C & E, lipoic acid, CoQ10 and glutathione are a network. Failure in any one diminishes all the effects. Many such interactions probably exist.
    2. This protocol was in the end costing me $100 per week in 1999 dollars ... and I was on a pension.
    3. After about a week of restored energy, I started getting a migraine every single aftenoon, for most of the day.
    4. I could not get any medical or biochemical advice that was helpful.

    So I halted the protocol. I went back to university to finish my partial biochemistry degree. I also joined an online group in which Martin Pall and Rich van Konynenburg were members. I was their online debating partner for five years. In that time I also finished my biochemistry degree. I was acutely aware we did not know enough. A community like this did not exist or was easily available. The online debating effectively ended in about 2005, though Rich continued to moderate till he died.

    Right now my health is not great, this may be my last attempt to try anything like this. I am also aware of many breakthroughs in general nutrition science, and in my understanding of my own situation. So I am restarting the approach, health permitting.

    This kind of approach is how I figured out how to personally test combinations of treatments. Conventional research is really, really bad at doing this, and it takes forever and is very expensive. However any answer I find for myself is not necessarily generalisable to anyone else. I cannot make recommendations, even aside from the legal aspect. Yet I can indeed find personal answers.

    Just because something has failed repeatedly in personal testing does not mean its not working. Interactions can change everything.

    My new approach includes higher dose resveratrol than most people take, and intermittent fasting. So far so good, but it will take many many months.

    If clinically prescribed SS31 were available, with research to back it, I would be pushing hard to get hold of it myself. I would still be interested in testing it under my shotgun protocol though.
     
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  7. Kitty

    Kitty Senior Member (Voting Rights)

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    But this speed is to a large extent determined by the available funding.

    The prototype nanoneedle is far too slow, it takes up a huge amount of salaried time to process one person's samples. So it needs to be made faster. They're confident they can do it, and I have no doubt they would have developed it already if they'd had the financial support.
     
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  8. MeSci

    MeSci Senior Member (Voting Rights)

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    Just a warning to anyone thinking of trying resveratrol. This is from Phoenix Rising - I posted it in 2015:

    "Have you checked whether your resveratrol supplement doesn't contain emodin? This can have adverse effects, notably being a laxative. Resveratrol from Japanese knotweed will often contain emodin, and it's not always on the label."
     
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  9. cassava7

    cassava7 Established Member (Voting Rights)

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    Don't do it. There is a reason that research compounds are only available through specialized biochemistry labs -- they are able to quantify the amount of impurities in the final product and their manufacturing process is traceable. There is no guarantee whatsoever on what you buy from an unknown provider, in terms of 1) what the powder actually is, 2) if it is SS31, what's the amount of impurities, 3) how it was made.


    The development of the new nanoneedle has sped up recently :) If you haven't seen Janet's update on PR: https://forums.phoenixrising.me/threads/nanoneedle-update-finding-whats-in-the-blood.78592/
     
  10. alex3619

    alex3619 Senior Member (Voting Rights)

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    Resveratrol has two sources. One is knotweed. The other is grape skin, if I recall correctly, but its at least derived from grapes. Grape skin is superior, but I think its more expensive. I have been cautious with resveratrol, only taking the minimum necessary for the therapeutic effect for bronchospasm. Never a higher dose. That is now changing, because the data is coming in more and more positive. There are too many good things that happen on resveratrol.

    One of the SS drugs, I do not recall which, it might even not be SS31, is a resveratrol analogue, at least in one of its versions, as there are multiple formulations. As a pure synthetic its very, very promising ... but will also be even more expensive.
     
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  11. Badpack

    Badpack Established Member (Voting Rights)

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    @cassava7 Yeah, i read those posts. But tbh. the words "We are working as fast as we can to get this into operation." means in Ron Davis speech, its done in around 2 years. Dont get me wrong, im very thankful for his hard work in his high age and getting this all started, but it just takes way to long. I think SS31 is an awesome attempt in the right direction, but now that they failed their first Phase 3 trail, it means it wont be commercially available for years. So im seeking other way to get my hands on it. So if anyone has a smart idea. Im all ear.
     
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  12. alex3619

    alex3619 Senior Member (Voting Rights)

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    In summary the new machine, which is almost ready, is very cheap and can run a very large number of samples at a time. The problem has been each device had to be hand crafted by an expert, and could only work on one sample. I look forward to more news.

    There are three useful ways to proceed in my view. One is empirical, using something like the nanoneedle to run test beds. Drugs that test positive on that still need further study, including on actual patients in phase one to phase three trials.

    The second is systems biology. Find the affected pathways, model them, test things in silica before moving to in vitro and finally trials.

    The third is much less scientific, to go with perceived results to titrate treatments like in my shotgun protocol. Scientifically its only vaguely suggestive, but not without personal value to me at least, and not without high risk of biases. I consider it the layman's version of systems biology with empirical testing. I am big on systems theory as a tool. It requires no expensive technology to do this, but cannot form the basis of scientific findings. In theory you might need to keep titrating doses indefinitely, which is definitely an issue. Its also not without risk of side effects - all interventions have that risk. Indeed I had to stop it originally because of migraines.
     
  13. alex3619

    alex3619 Senior Member (Voting Rights)

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    There were four successful drugs in the nanoneedle test, one of which is approved and commercially available. Approved drugs have the potential to be used off-label, legally, you just need the right medical support.

    The downside to antioxidant therapies is that some biochemical processes absolutely require free radicals. Those can be suppressed by antioxidants.
     
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  14. Badpack

    Badpack Established Member (Voting Rights)

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    @alex3619 yeah sure, but after seeing Ron inviting Jennifer Brea to give a speech about fake science i'm doubting their competence getting everything done. Who is next ? Gwyneth Paltrow who tells him she can cure CFS with her GOOP products? Vagina smell candle against fatigue?
     
  15. mariovitali

    mariovitali Senior Member (Voting Rights)

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    @Badpack

    I believe that we are not in a situation to dismiss things so easily. Whatever Jennifer discussed , some bits may be noise but some bits may be golden nuggets that can help us identify what are the main mechanisms behind ME or they may help us better differentiate ME from other conditions.
     
    Last edited: Jan 30, 2020
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  16. alex3619

    alex3619 Senior Member (Voting Rights)

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    Fake science discussion about medical rhetoric masquerading as science, such as PACE, would always be welcome. Any fake science detracts from obtaining funds for much better science.

    Also the advance of science is necessarily sloooowwwwwwwww. Its also expensive. Where Ron and his team have a history of excellence is developing new and better technology that is much cheaper. That means that further study could do much more on a much lower budget. The new nanoneedle will accelerate research in those areas in which it is applicable.

    I needed a cure a long time ago, and there must be millions of us in the same place I am. Everyone new needs a cure as soon as possible. Yet there have only been a few major breakthroughs, about once a decade, until recently. New technology, and new areas to investigate, have accelerated things. Yet its not as fast as we need, it never will be. We don't get those years back. But once there is a cure, future patients will be ever so thankful for all the effort that was put in.
     
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  17. JES

    JES Senior Member (Voting Rights)

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    Copaxone, elamipetride and suramin. Which is the fourth one? Of the three aforementioned, elamipetride was the one that seemed to have most potential and is now years away from approval it seems. Suramin at lower dosage is what Naviaux apparently wants to trial, but the progress seems really slow and suramin availability is anyhow poor, Bayer didn't even offer it to Naviaux. Copaxone has the best availability of those three, but price and safety is another matter...
     
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  18. alex3619

    alex3619 Senior Member (Voting Rights)

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    Wasn't there two ss drugs? ss31 and ss19?
     
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  19. alex3619

    alex3619 Senior Member (Voting Rights)

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    The big issue in early trials is safety. While it was not effective, it did appear safe. That helps a lot.
     
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