• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Rewinding your biological age

Wishful

Senior Member
Messages
5,793
Location
Alberta
It probably wouldn't do much for ME. There are children with ME, so it's not an age disease. I think it's more of a "getting shot" event: something triggers it and you can't reverse the bullet wound. It should be possible to "heal the wound", resulting in no more symptoms, but it might the ME mechanism might still be there, ready to be triggered again.
 

Oliver3

Senior Member
Messages
892
It probably wouldn't do much for ME. There are children with ME, so it's not an age disease. I think it's more of a "getting shot" event: something triggers it and you can't reverse the bullet wound. It should be possible to "heal the wound", resulting in no more symptoms, but it might the ME mechanism might still be there, ready to be triggered again.
Liz Parrish got into this to stop her son's type 1 diabetes. She's in it for all the right reasons as far as I can see.
We don't know that's it's not an age disease. It's a spectrum disease for sure.
For myself and many others there was a time when we were well. Ok, we had vulnerability but we didn't suffer like this. If this could be a holding treatment for some it would be great.
All of us who have been sick for a long time have SARCOPENIA. Liz put back on her muscle mass.
Also the metabolic aspects of ageing improved in her.
To have no curiosity in this type of potential treatment is bizarre.
I saw a woman post on Janet dafoes page. She had mezanchymal stem cell therapy for her CFS ten years ago and it cured her.
As far as I understand it, the cell danger response is being triggered. Well restrengthening the body, relengrhening the telomeres is a sensible idea.
Naviaux says our healing cycles are broken. He used suramin , which to me is a regenerative medicine prototype. Anything that helps complete those cycles we need
He got good results.
I also saw in her presentation for bioviva this year that her therapies help with damaged immune systems, weak immune systems etc.
Having no interest in a therapy that at least may lessen our suffering is crazy....so what if m.e. is triggered again..it may not be as bad, it may not happen. There's too many mights and might nots not to give this a go
 

JES

Senior Member
Messages
1,324
We know it's not an age disease because ME/CFS onset, although a bit poorly documented, seems to most likely occur between ages 15 and 40. We also know that women are more likely to get ME/CFS. This points to it being more likely autoimmune than anything else.

I have tried quite a few "de-aging" supplements, including a large number of antioxidants. They made my symptoms worse with few exceptions. Resveratrol in particular has been hyped quite a bit, but also made my symptoms worse.

The suramin news are from five years ago. I'd love to see it get forward, but it seems almost nobody with ME/CFS has even trialed it and its efficiency seems to be only theoretically speculated for now.
 

Oliver3

Senior Member
Messages
892
As I said it's more of a spectrum disease.
BUT, we do show signs of rapid ageing.
Added to that. If you can relengthen tekemores, you can put on more muscle, which improves metabolic disease

One of the things her company targets is weak immune systems. Which may be a problem for us
Relengrhening tekemores etc MAY strengthen tight junctions in the gut and blood brain barrier.
As she points out, she's working with mitochondria to reverse disease.

For me , CFS is a tissue disorder, that means we have a lower threshold for the insults of today's world.
If we can rewind some of that, it will make tissue function better.

Perhaps don't see it as rewinding the clock and biologically making key structures work better, including metabolic health and structural health.
Her company is working on dementia and has had good results. Early stages tho.

I'm not saying this is a cure, but I am saying this may really help a lot of people to suffer a lot less.

As I said , a poster to Janet dafoe on Facebook said stemcell therapy had completely reversed her bed bound state and she's been free of m.e. for years now.

So what happened there? Surely we have to be curious to these ideas.

I think the naviaux thing was proof of concept. He too worried about relapse, but if you keep taking the meds then you have a chance that won't happen.
Naviaux basically says healing cycles don't complete and that results in all illness.
Well regenerative medicine would improve that.

I think he's working with NASA at the moment as astronauts have very m.e. like symptoms when they get back to earth, particularly with mitochondria..
Naviaux will get more progress this way is probably the thinking
 

Wayne

Senior Member
Messages
4,331
Location
Ashland, Oregon
Naviaux says our healing cycles are broken. He used suramin , which to me is a regenerative medicine prototype. Anything that helps complete those cycles we need
Hi @Oliver3 -- Interesting information, thanks for posting. I've noticed in various YouTube videos and other online information that fasting and HBOT are two things that can stimulate stem cell activity, possibly leading to improved health. I'm hoping to combine these two approaches in the coming months and see what happens.
 

Treeman

Senior Member
Messages
799
Location
York, England
I first got ill when aged 7, my daughter at 12, mine isn't an age related issue.

From the research I view which explains my symptoms, my illness appears to be driven initially by an infection, then immune dysfunction. Chronic inflammation persists, low blood oxygen/micro clots which prevent the tissues being able to support cell recovery.

I've started a slow intervention program to deal with all the issues. I think I need to fix all aspects in an integrated manner.
 

Oliver3

Senior Member
Messages
892
You're missing the point about age related therapy. I used that title because people would be drawn to it.
I've just been listening to one of her zoom meetings.
She said telomerase ups your mitochondrial function. Your metabolic function, your immune system
Also improves t cell function.

They're finding and beginning to treat immune dysfunction, immune deterioration through gene editing.
Think about it. All medicine is a way of altering epigenetics and influencing genes anyway. This is more precise.

According to Parrish, it's within our grasp to edit out heart disease, muscular dystrophy etc etc etc. So for example, our vascular system is compromised. Gene editing will eventually delete those faults once we know exactly where they are.

Yes you can be born with " errors". We all are. It just depends when they show. Some show right from birth. Some subclinical til your mid thirties.
Liz gave the example of muscular dystrophy at birth. She said that can be edited.
It's obviously the way forward in medicine. I don't know why it's not being explored
 

Oliver3

Senior Member
Messages
892
I first got ill when aged 7, my daughter at 12, mine isn't an age related issue.

From the research I view which explains my symptoms, my illness appears to be driven initially by an infection, then immune dysfunction. Chronic inflammation persists, low blood oxygen/micro clots which prevent the tissues being able to support cell recovery.

I've started a slow intervention program to deal with all the issues. I think I need to fix all aspects in an integrated manner.
So as you allude to, there's smthg genetic in your predisposition to m.e. it's no surprise is it we know it runs in families.
What made you susceptible to that infection. It's a common theme in m.e.
 

Treeman

Senior Member
Messages
799
Location
York, England
So as you allude to, there's smthg genetic in your predisposition to m.e. it's no surprise is it we know it runs in families.
What made you susceptible to that infection. It's a common theme in m.e.

I'm waiting for genetic testing results.


However. It still took a trigger (I think an infection) and if we consider that W H O estimated there's 35 million in Europe suffering with long COVID, genetic susceptibility and triggers are not uncommon.
 

Oliver3

Senior Member
Messages
892
For me, it's not the infection per se, plenty of people recover from infections. It's how we sufferers react. Why do we respond differently? There's smthg genetic about that obviously.
So a combo of gene editing and improving all markers of ageing ( and the benefits to metabolic health that brings) would be avenues to be looked at
 

Wishful

Senior Member
Messages
5,793
Location
Alberta
My reason for not being more enthusiastic about this approach for ME is that it's a theoretical treatment, and the problem is that ME doesn't have the knowledge base to build a theory on. How can you chose a theoretical treatment when you don't know what mechanism you're trying to fix?

Think of a car engine that is performing poorly. Install supercharging and nitrous oxide injection: more power, whoo hoo! However, if the problem is a blocked exhaust pipe or inadequate cooling, boosting the power would be a very bad idea. With ME, we don't know what is causing the symptoms. There are some papers claiming that some PWME have mitochondrial abnormalities, and some that have blood flow abnormalities, and some showing some cytokine abnormalities, but there are also papers doing similar studies that show a lack of those abnormalities or even the reverse of those abnormalities. I haven't seen a paper yet that shows that all (or 90% or even 80%) of PWME have <whatever abnormality>. We do know that people with ME show wildly different responses to various treatments: some do well, some show no effect, and some are made even worse ... and no one knows why.

Would telomere lengthening help PWME? Would it have the effect of supercharging the malfunction and making people worse? At this point, I think the two possibilities are about equal. I think it might be worth studying as a treatment once we know what ME's mechanism is, but until then it's just one more wild gamble. If someone with ME has the opportunity to try it and reports favourable results, then further study deserves more weight.
 

Oliver3

Senior Member
Messages
892
I'm perfectly willing to be a candidate for tekemore lengthening etc.
We're in the dark...life can't be much worse. I'd try anything than improves metabolic function etc.
Just saying it's theoretical is because no one wants to try. It wouldn't be theoretical if we did.
Like I say, the girl who posted to Janet dafoe saying that mezanchymal stem cells had cured her CFS was adamant we should try.
Who knows perhaps it restored the gut junction and that was all she needed.

From what Liz Parrish says, they know how to edit. T cells, improve immunodeficiency.
George Bush outlawed all this kinda work, so it's in Panama. She wanted to cure her son. So she became patient zero herself.
The regenerative protocols she took helped restore her waning muscle mass ( she was late 40s at the time) and now has the metabolic health of a 25 year old.
Have you seen her. She looks incredible for 53.
I'm happy to take risks at this point and would welcome these treatments. We learn if it goes wrong or right
 

Oliver3

Senior Member
Messages
892
Btw, when Parrish took the protocols. She had no idea if it would cause cancer or anything else. She did it anyway
Maybe I'm a risk taker but another ten year wait for nothing seems stupid
 

JES

Senior Member
Messages
1,324
Hm so why haven't Janet and Ron tried this on Whitney? Ron is a geneticist so this is right up his alley.
 
Last edited:

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
Another way to look at cfsme is that it's a catabolic condition. This can lead to sarcopenia in aging as well as many other chronic health conditions.
Our catabolic conditions are outweighing our anabolic processes.

This is understandable especially when many with cfs have low anabolic hormones like dhea, testosterone and growth hormone and all are negatively effected in healthy people who have poor sleep, so image cfsme with chronically poor sleep.

Replacing these hormones to optimal levels isn't necessarily a cure but it can help reverse sarcopenia, reverse the balance of the body from catabolism to anabolism and this can help the body repair and heal from inflammation and oxidation. This can help the body retain nutrients better and use nutrients better ie nutrient partitioning. Just helping move the body from a stress and breaking down stage to a growth and repair stage.

This is a common strategy used in treating HIV pts along with directly treating HIV. Before there were antiretroviral drugs in HIV, anabolic steroids and growth hormone stopped and reversed the muscle wasting and in some cases improved immune function and anemia and also increased life span and quality of life.

So we can definitely borrow things like hormone replacement therapy from the antiaging crowd👍