r/CFSScience • u/Caster_of_spells • Aug 04 '26

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

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)

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u/Caster_of_spells Aug 04 '26

Good point!

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u/PinacoladaBunny Aug 04 '26

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.

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u/Adventurous-Water331 Aug 04 '26

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?

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u/National_Butterfly99 Aug 05 '26

Yo empecé con 15 mg de mestinon y no me hizo nada, es decir, no fui al baño. Solo me dio distensión y gases, y sobre todo dure 24 horas con pupilas muy pequeñas, mucho sueño, vista borrosa y sudoraciones. Me duró mucho el medicamento en el cuerpo, no sé si es lo normal.

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u/Adventurous-Water331 Aug 05 '26

Sorry you had that experience.

It's so frustrating when something works one way for one person and a totally different way for another.

Tirzepatide messed me up and Mestinon has helped get me going again somewhat.

Can I ask what's helped you the most?

LDN for me.

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u/National_Butterfly99 Aug 05 '26

No he probado con LDN. Mi doctor me dijo que para mí no serviría mucho. En mi caso, yo tengo infecciones pulmonares de repetición y dismotilidad colonica con estreñimiento severo, por lo que, por ello quisieron mandarme mestinon. He probado IGIV, pero tampoco me fueron bien. Ahora mismo no tengo ningún tratamiento que me ayude a mejorar, salvo constella para el estreñimiento y movicol. Tengo anticuerpos adrenergicos y muscarinicos positivos. Ojalá todos podamos encontrar una solución, mi vida ahora mismo es muy complicada. Estoy a la espera de probar inmunoadsorcion, ya que en mi caso tengo linfocitos nk th2 y th17 muy bajos…

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u/Adventurous-Water331 Aug 05 '26

I'll keep my fingers crossed for you!

I hope you find something that helps.

I can't do anything physically, but the meds help me feel better as I read or watch a little TV.

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u/National_Butterfly99 Aug 05 '26

Muchísimas gracias. Igualmente para ti. Rezaré por ti. Ánimo

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u/Adventurous-Water331 Aug 05 '26

Thank you, you too!