Note: this blog post is a Work In Progress; I'm still writing and updating it.
TL;DR; Almost no exhaustion in 30+ consecutive days; Have tried NAD supps before without noticing anything but tweaked dosage and timing with great results. Some brands are completely useless.
Important: ME/CFS is very individualistic. While I hope you'll see the same benefits I did, this definitely won't help everyone! Worth trying but please manage your expectations.
NAD+ has basically been a PEM-blocker for me, and I'll explain. (PEM = Post Exertional Malaise, a hallmark symptom of ME/CFS; note: this post is geared towards others suffering from Chronic Fatigue).
What I took:
I took this orally, though there are other options (IV and subcutaneous injection). But, there is a HUGE quality difference between brands (presumably due to the delivery / bio-availability tech). My 250mg with current brand has been life changing, but even 1200mg with another brand was almost completely useless (exhaustion and PEM all came back), and from a third brand, it took 1000mg to get roughly the same result as the 250mg from original brand).
Disclaimer: I'm not a doctor and this is not medical advice. I'm only sharing what worked for me. You should inform and consult your doctor when trying new supplements especially when taking other things concurrently. Do not exceed the recommended dosage on the bottle without medical supervision.
How it's helped:
PEM for me is mostly just a totally wiped-out almost "ringing" exhaustion. I have brain fog 100% of the time anyways, but when PEM hits, I struggle to form sentences and can go a little crazy.
I usually get "light PEM" every day after lunch, that disappears after my nap, and stays away for the rest of the day if I limit myself to minimal activity. Exercise gives me a "medium PEM", which lasts about 2 days to a week. Family holidays break me with "extreme PEM" that take a few months to recover from.
I guess this classifies me has having "moderate ME/CFS", since I've never been bed bound. But with bad PEM I have to cancel all my plans, can't focus on much, watching TV helps but it can take a few weeks of recovery before I I'm really able to follow the story line and actually get an enjoyable relaxing experience from it.
Limitations
I still need to pace, but much less. I can do much much more than I ever could before but I can still push myself too far and get that ringing exhaustion feeling, but it's much quicker to recover from (e.g. feel not great but still siginificantly better than I would have previously felt the next day, for e.g. something that would usually take a few days / week to recover from).
I still have have brain-fog. With exertion it gets worse, but still, experiencing this without exhaustion simultaneously is a big step up. I feel like my brainfog baseline is gradually increasing and hope to report back more in a few months time.
Timing
I'm still exploring this further but so far it seems like I get better results from taking smaller doses when I need ("PEPM") them vs one big dose in the morning.
The one interesting thing is that depending on timing, you can literally feel it working. I typically get the ringing exhaustion every day after lunch (depending on morning exertion). If I take the supps before I feel it, it doesn't come, but if I start feel it coming on, I can take the pills, the exhaustion keeps building up for about another half hour or so (digestion) and then slowly reverses itself and disappears. I'll still be tired! Just without the deliberating exhaustion.
It also reverses PEM! Which came back after inadvertently switching to an inferior brand. I was going a bit crazy and was ready to cancel all my plans for the next few days, but took my original brand again, had a nap, and felt so much better afterwards I was able to socialize for hours and also keep all my plans for the next two consecutive days!
Other things I'm taking / doing
Supplements: TODO
Medical Cannabis: the other single biggest help in all these years. High CBD indica oil for a deeper, uninterrupted and more restful, restorative sleep. Or a vape before naps and/or in the evening to slow down. Also helps me reduce symptoms of moderate (but not severe) PEM.
Jikiden Reiki (helped my brain-fog a lot even before starting the NAD+, need to get back to this regularly)
Vagus Neverve Stimulation - very new. I found the Pulsetto helped me reach deeper relaxed states I struggled to get to alone. I unfortunately didn't notice much from the Neurosym. Further exploration also planned for inflamation / brainfog and a few other things.
Meditation, delta-wave brainwave entrainment.
Future Experimentation
Exercise: I really hope to up my exercise duration and frequency, both to learn my new limits and also see how this affects my energy longer term too. Watch this space!
Precursors: There are NAD precursors (like NA, NAM, NR, NMN, tryptophan) and precursors of precursors. It would be interesting to see how high up the chain I could go and still get a result, to figure out where the dysfunction is. However after finally getting relief after 15 years I'm not rushing to go back, and plan to limit most of my experimentation now to rediscovering myself on NAD+.
Caffeine: early experimentation hints that maybe this will have more benefit and less cost than it did previously.
Overall I'm very excited for 2025 to rediscover my limits and get to enjoy my life in a way that hasn't been possible for over a decade.
Longer personal story
The "positive" side of PEM for me is that when it's really bad it motivates me to research anything that could even remotely reduce ever feeling like that again.
ChatGPT's o1 "reasoning model" has been a bit of a godsend in this area, as it really helped me understand and explore things better. I was particularly fascinated by the "delayed onset" of PEM and trying to understand the possible biology involved. One of the interesting avenues was that one suspected cause / contributor to ME/CFS is mitochondrial dysfunction, and from there, possible treatments / support, one of which was NAD
After a long family holiday, my baseline was pretty low. I had just over done it with an outdoor excursion and knew exactly what kind of PEM was headed my way. I desperately returned to ChatGPT, landed back on NAD, and had some lying around as I'd tried to previously without noticing much. But this time I took it "PEPM" ("post-exertion, pre-melaise"), 50mg NAD with CoQ10. Then I just sat down in front of the TV waiting for the expected and familiar suffering to come, only to find (to my great surprise) that it was 80% less than what I expected.
Further experimentation found that if I took a bit more later in the day, I'd end my day and get to bed without feeling so wiped out. It was quite a weird and unfamiliar feeling after so long.
I then got hold of NAD+ to compare, and had even better results, but more likely just because the pills were 5x bigger at 250mg NAD+ (to which I added 200mg CoQ10).
This was at the start of our next family holiday, before having fully recovered from the previous one. Actually, I had to excuse myself from the first week of the holiday just from all the exhaustion from overseas travel and errands.
Very unexpectedly, I continued to feel a bit better every day even during this holiday (vs feeling worse and worse every day). I finished the holiday feeling better than I did at the beginning. I'm sure anyone else with ME/CFS can truly appreciate the significance of that!
I've been experimenting with dosage, timing and other supplements. I'm handling levels of activity that were outside the realm of possibility for me before. I still haven't had a chance to "properly" relax and recover so can't wait to see how I feel when I'm back at my "peak" and where my new peak will be. I'm also very excited as mentioned to experiment with upping frequency and duration of exercise and see how it affects me, as this is also something that was simply not possible before.
Research
There is an ME-Pedia article on NAD which lists some "notable" studies:
In one study (with a small sample size of 26), 31% responded favourably to 10mg NADH over 4 weeks vs 8% with placebo.
In another study (of 31 participants), the NADH-taking patients had a "dramatic and statistically significant resuction" of symptoms in 1st trimester, however, in 2nd twimester, syptoms were similar to conventional therapy.
In a comparison of alternative treatments for ME/CFS and Fibromyalgia, NADH and Magnesium were the only two supplements of all investigated that had any notable effect.
Overall, disappointingly low amount of research in this area, although searching online did reveal a number of blog posts including by e.g. this functional medicine doctor pointing to very positive "anecdotal" results (i.e. not a study). Obviously clinical studies into non-patentable drugs will always be more rare.
This study, "The Role of Kynurenine Pathway and NAD+ Metabolism in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" delves deeper into the connection between NAD+ and ME/CFS but is probably too heavy a read for most patients, and also comments on the lack of clinical trials on the subject.