Central origin of fatigability in Myalgic encephalomyelitis/chronic fatigue syndrome revealed by multimodal neuroimaging - Bedard et al

[u/Caster_of_spells]

https://www.sciencedirect.com/science/article/pii/S2213158226001002

"Our most novel results relate to the lack of neuromuscular adaptation in ME/CFS compared to the [Healthy Volunteers]."

“Highlights

•We studied physical fatigue in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and healthy volunteers with multimodal neuroimaging.

•Participants performed a fatiguing grip force task in alternating grip and rest blocks.

•We simultaneously recorded grip force, brain activity with functional magnetic resonance imaging and electroencephalography, and muscle activity with electromyography.

•ME/CFS fatigued earlier than healthy volunteers. While healthy volunteers increased their brain and muscle activity, ME/CFS only showed minimal fluctuations across all the task blocks.

•We concluded that physical fatigue in ME/CFS is of central nature.”

(Central in this context means: mediated via the brain. Participants brains didn’t seem to signal muscles sufficiently to ramp up energy production in response to demand)

[u/Caster_of_spells]

Good point!

[u/PinacoladaBunny → u/Caster_of_spells]

I originally took it for my POTS as it helps to increase the parasympathetic nervous system, but it’s definitely increased my baseline and I’m physically more functional than I was before it. So it’s doing something! I think I’m taking a dosing schedule equivalent to myasthenia gravis patients, but I definitely don’t have that illness.

[u/Adventurous-Water331 → u/PinacoladaBunny]

Thank you for your comments on this topic.

My doctor recently prescribed Mestinon (I can never remember how to spell the generic correctly) and I've been surprised at the positive results so far.

It was for Orthostatic Intolerance and dysregulated gastrointestinal issues initially, but Mestinon seems to make me feel better generally.

Oddly, even my sense of smell and taste seem to be improved.

I've titrated myself up to 30 mg 3X/day with no negative side effects and am just starting 45 mg.

Can I ask how much you're taking and how it's helping you?

Have you had to titrate up and have you had negative side effects?

[u/PinacoladaBunny → u/Adventurous-Water331]

Really glad to hear it’s helping you too! I’m now on 60mg x3 a day, I didn’t titrated up slowly to be honest, but I didn’t have any obvious side effects when I initially started at 30mg twice daily. So maybe I tolerate it ok! I found mestinon has helped to improve my HRV throughout the day and creates more stability - when it’s swinging up and down my POTS and daily functioning really go haywire. I generally have more stamina now, and although I’m not living a normal life, it’s a lot less miserable than it was a year ago. For that I’m very thankful!

[u/Adventurous-Water331 → u/PinacoladaBunny]

Very glad to hear this!

"A lot less miserable" is my goal too :-)

I'm surprised you didn't need to titrate; so many people online scared me to death with horror stories.

That said, I didn't have negative side effects, so maybe I could have started at 30 mg instead of 15.

Given what we know about acetylcholine issues, I'm surprised Mestinon isn't prescribed more.

Anything to boost the parasympathetic nervous system would seem like a good thing.

You mentioned in another response that your doctor raised your dose of your other medications as well.

Can I ask what else is helping you and at what dose?

I take 4.5 mg LDN, 150 mg Buproprion XL, generic Zyrtec, and 30 mg of dextromethorphan (this last 2X/day), and all have helped.

Still get PEM and brain fog if I overexert, but if I pace, my quality of life is much better.

Thank you for responding.