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Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)

Learner1

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I am not a fan of Hip's list. It does not mention glutathione, the body's most powerful antioxidant, or other antioxidants.

Oxidative and nitrosative stress is a known feature of ME/CFS. Activity can increase oxidative stress. Taking glutathione and other antioxidants, like vitamin C, which recycles glutathione, vitamin E, which recycles C, and ALA, which recycles both fat and water soluble antioxidants can be extremely helpful.

I've found that taking glutathione and BCAAs before exercise can help me avoid PEM, and when I have gotten PEM, without taking them before, it has reversed PEM within 30-45 minutes.

I've doubled my antioxidants the morning before a CT scan and found myself running across the street at the end of my usual walk - I'm never able to run, do I found it quite an impressive effect. Overdoing this strategy can be counterproductive, so I only increase antioxidants like that if I know my body is going to be extremely stressed. In hindsight, if I've overdone it, and the glutathione and BCAAs don't work, I try taking a cocktail of antioxidants.

Taking steroids like hydrocortisone, Prednisone, etc. are somewhat of a dangerous crutch. Many ME/CFS patients have adrenal insufficiency and ideally should be on a hydrocortisone replacement, and not be taking it sporadically - up to 30mg a day, in divided doses. Prednisone is 6 times as strong and overkill. Long terms steroid use has its own issues, so unless it's needed (24 hour saliva or urine cortisol test) it's probably not a good idea. And, done patients have too much cortisol so adding steroids could exacerbate the problem, causing weight gain, bone loss, etc

Another area to look at is "low T3 syndrome" where reverse T3 is high and free T3 is low. Supplementing T3 (liothyronine) so FT3 is in the upper half g the range, and reverse T3 drops to normal might be helpful.

Curcumin is another antioxidant, anti-inflammatory, COX2 inhibitor, etc.
Pouyah said:
I have tried both citrulline
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Citrulline aids the urea cycle helping to rid the body of ammonia, etc. And it can help increase nitric oxide, like ornithine, arginine, and Kuvan. If your utes cycle works well, this strategy would not be helpful.

And, upping protein intake can be helpful as well.
 
bensmith

bensmith

Senior Member
Messages
1,547
I have had frequent urine and kidney pain, but it came and went, as about a couple dozen other symptoms.
 
Hip

Hip

Senior Member
Messages
17,874
Learner1 said:
I am not a fan of Hip's list. It does not mention glutathione, the body's most powerful antioxidant, or other antioxidants.

Oxidative and nitrosative stress is a known feature of ME/CFS. Activity can increase oxidative stress. Taking glutathione and other antioxidants, like vitamin C, which recycles glutathione, vitamin E, which recycles C, and ALA, which recycles both fat and water soluble antioxidants can be extremely helpful.
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In this thread is not focused on speculations about what might help PEM. There are thousands of supplements that might help PEM.

This thread lists drugs and supplement which ME/CFS patients have actually found do help reduce or prevent PEM. It just collates stories posted by ME/CFS patients who found that a particular drug or supplement helped their PEM.
 
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T

tima

Messages
12
@Hip, or indeed anyone else, would there be any merit in trying to dissolve D-ribose in coconut oil, then applying to the skin? The intention being to avoid feeding sugar-loving gut bacteria.
 
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Learner1

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
tima said:
@Hip, or indeed anyone else, would there be any merit in trying to dissolve D-ribose in coconut oil, then applying to the skin? The intention being to avoid feeding sugar-loving gut bacteria.
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D ribose does not convert to nicotinamide riboside in everyone. It's far more direct to just take NAD+ or NMN. Coconut oil MCT oil are great for the skin.
 
Hip

Hip

Senior Member
Messages
17,874
tima said:
@Hip, or indeed anyone else, would there be any merit in trying to dissolve D-ribose in coconut oil, then applying to the skin? The intention being to avoid feeding sugar-loving gut bacteria.
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I am not sure you would get a sufficient dose across the skin.
 
Learner1

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Pouyah said:
Has anyone tried to switch to ketogenic diet to see if that helps?
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Having a steady blood sugar is helpful. I've found a lower carbohydrate diet has been helpful, but I need too much protein to be fully keto - I had the same low amino acids as Fluge and Mella found to be low in ME/CFS patients, with accompanying symptoms.
 
CSMLSM

CSMLSM

Senior Member
Messages
973
Hip said:
Interestingly, some ME/CFS patients report that moderate doses of cannabis do not produce any high at all. This observation is interesting in itself, as cannabis will normally get people high; but the fact that in ME/CFS, moderate doses of cannabis often do not cause any high is intriguing. And this is good news for patients who would like to benefit from the anti-PEM effects of cannabis, but do not want to experience a high just in order to gain these benefits.
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Hip said:
In terms of why cannabis has this anti-PEM effect, this article says the THC and CBD active principles in cannabis can affect mitochondria: cannabinoid type 1 receptors (CB1) are found on mitochondria, and THC is an agonist of the CB1 receptor, whereas CBD is an antagonist of this receptor. So maybe that is how cannabis helps avoid PEM, by modulating mitochondrial function.
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The possible reason ME/CFS patients get less high is the elevated Leptin that we have. Leptin causes an enzyme to be produced at a higher rate that is called Fatty acid amide hydrolase (FAAH) which is the degrading enzyme of Anandamide. Anandamide is one of the bodies endogenous cannbinoids and binds to CB1 and CB2 receptors. So naturally we have lower cannabinoids to start with binding to CB receptors. It is way more complicated than that but I feel its the gist of it.
 
CSMLSM

CSMLSM

Senior Member
Messages
973
Wishful said:
Not just supplements and drugs. I still think there's a reasonable chance that someone is going to find that something in a weird-flavoured/coloured jellybean works for them. :)
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Jan 31 2022, you sort of predicted me :). I first used Copaiba from the sap of the Copaiba tree on Feb 8 2022. It has Caryophyllene as its main molecule.
I discovered Caryophyllene some time before, using it but had no direct evidence it was the active ingredient working and did not have nearly enough to work properly with how I was consuming it. It was not the main ingredient in what I was consuming and was with other less optimal molecules.

So a natural tree sap just like maple syrup is the future of ME/CFS treatment if people can get over it binds to a cannabinoid receptor (CB2), works on SIRT1, PPAR`s, increases glutathione, increases lipid metabolism among many other already targetted and researched therapeutic directions. It works on the immune system to down regulated inflammation and control dysfunctional immune cells through apoptosis and state switching like with microlglia being made to express an anti inflammatory M2 state.
 
dannybex

dannybex

Senior Member
Messages
3,564
Location
Seattle
kewia said:
Those permanently supplementing with Carnitine should take care according this study.
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It's worth noting that patients in that study were on a plethora of drugs: "(statins [95% of participants], angiotensin converting enzyme inhibitors, angiotensin II receptor blockers, anti-platelet, anti-coagulation, diabetes medications, calcium channel blockers, diuretics, anti-anginal, and nonsteroidal anti-inflammatory drugs—NSAIDs)" -- many of which can influence mitochondrial function -- especially statins -- which we know is a problem in ME/CFS. Also, the 49% of the placebo group were on beta blockers, some of which have also been noted to mess w/mitochondrial function, compared to only 33% in the l-carnitine group.

It's an interesting study, but it would be nice to see one done without so many confounding factors.
 
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