ME/CFS: Have peptides helped anyone?

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SoreTodayStrongTomor

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Hi all,

My diagnosis is ME/CFS, and PEM is part of my picture. Lately I’ve been looking into the mitochondrial dysfunction and energy production problems discussed in ME/CFS.

I realize none of these are established treatments. Still, I wanted to hear whether anyone here has given these a try:

  • SS-31
  • MOTS-c
  • Thymosin alpha-1

If so, was there any improvement in:

  • PEM / crashes triggered by activity?
  • Exercise capacity, or fewer crashes?
  • Delayed PEM, rather than only day-to-day fatigue?

Did anyone experience adverse effects or feel worse?

Separately, were any benefits only seen once other issues were managed, such as POTS, dysautonomia, sleep problems, or MCAS?

I’m hoping to sort actual patient experiences from internet hype.

Thanks.
 
There is a form of CF I live with, though it isn't the usual kind you'll see described online.

ME:

62M, ex-athlete

Hashimoto's thyroid failure

Secondary Adrenal Insufficency, severe and life threatening

Mixed Connective Tissue Disease, with RNP antibodies, similar to Lupus

Possible Myasthenia Gravis, with muscles that don't respond

The classic CFS pain symptoms aren't part of my picture. I feel no pain.

To put it plainly: SS31, along with MOTS-C, BPC157 TB5/400, GHK-Cu and Retatrutide, has not helped my severe fatigue, my inability to tolerate exercise, or the crashes lasting a week that come after I spend energy. Just recently, I had over a month of such extreme fatigue that I couldn't keep my eyes open. I doze off constantly, and my wife has to wake me. The dog checks whether I'm still alive. It is pure torture. So the peptides I've tried are not a cure, give no meaningful relief from fatigue, and maybe trying other peptides is the next step.

Still, Retatrutide has been a blessing in other areas. Massive weight loss, striking inflammation reduction, and a stronger metabolism, which lets me eat without stress and power my activities a little more. Before I used Reta, the starvation I required meant I had too few calories to do work.

SS31 and MOTS-C don't give me any feeling of relief. Yet something has changed. When I take the dog around the block, I can, if needed, jog a very short distance back home. It takes tremendous effort, but I hadn't been able to do that in years. I'm exhausted afterward, but I can do it.

I'm still looking for solutions. My health, however, continues its slow decline.
 
I live with both ME/CFS and Long Covid.

Retatrutide has taken some of the edge off for me so far and left me with a bit more energy. As for the rest, I cannot say - I have not tried them yet.
 
Showing up to this thread late, but I’ve had the same question. Seeing so few replies has been pretty disheartening 🙁

My partner’s symptoms line up closely with yours. After their C0vid vaccines, they later developed a seronegative spondyloarthritis form (meaning no autoantibodies). Beyond PEM, they also have general fatigue, sleep troubles, sleep problems, entheses inflammation, and more. It has left them utterly fed up! I’d hoped this place might offer some suggestions, yet I haven’t had any luck either so far.

If anything useful turns up, I’ll post updates here. Wishing you the very best <3
 
SS31 is something I’ve looked into, though I still haven’t gone ahead with it. The amount of information available on it is tiny next to what exists for the GLPs. Based on the material I’ve seen, the idea amounts to: ME might have a mitochondrial origin; SS31 is helpful for individuals with verified mitochondrial problems, so it ought to work if that theory holds, and would have no effect if the theory is wrong.

I realize this isn’t much of an answer. I’m posting anyway since I want to hear other people’s thoughts, and I’d like this to stand as proof that at least a few of us are exploring this on our own.
 
TA1 is the one I’d most want to try. Both conditions have plenty of measured T cell problems, and I’ve found that same imbalance in my own measurements. TA1 has solid evidence for correcting those imbalances. What has blocked me: a delivery of bad product, plus trouble tracking it down when stock appears and getting people to split the testing expense with me.

On the immune side, LL-37 and VIP also look potentially promising. They carry the same availability and testing-cost obstacles.

SS-31 might be interesting for mitochondrial repair, and so might MOTS-C, but my thinking is that they aren’t the main problem. They’re downstream of other aspects, so any intervention here is likely to wear off quite quickly.

I’m unable to report success with any of it. I also haven’t figured out how to obtain a tested product without paying a small fortune.
 
BrightCandle said:

TA1 is the one I’d most want to try. Both conditions have plenty of measured T cell problems, and I’ve found that same imbalance in my own measurements. TA1 has solid evidence for correcting those imbalances. What has blocked me: a delivery of bad product, plus trouble tracking it down when stock appears and getting people to split the testing expense with me.

On the immune side, LL-37 and VIP also look potentially promising. They carry the same availability and testing-cost obstacles.

SS-31 might be interesting for mitochondrial repair, and so might MOTS-C, but my thinking is that they aren’t the main problem. They’re downstream of other aspects, so any intervention here is likely to wear off quite quickly.

I’m unable to report success with any of it. I also haven’t figured out how to obtain a tested product without paying a small fortune.
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Tirz has been in my routine for 18 months, yet my ME diagnosis is recent. The main reason is that after 12+ years, no other condition fits. I was essentially told that no help is available. Then, via GLP1Chat, I realized there could be options I might try on my own, maybe restoring some quality of life.

During my research, SS-31 has been my main focus. It looks a bit easier to get, and it has had some trial success among individuals with other mitochondrial disorders. Even so, I fully plan to study the other items you brought up and hope they get easier to obtain as evidence grows.
 
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