Reduced Fatigue Symptoms with Amifampridine

[Dude]

Abstract​

After a severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, approximately 10-20% of patients are affected by the post-COVID syndrome (PCS). This condition leads to a variety of functional complaints, including symptoms of fatigue. To date, there is still no adequate treatment option. Five patients are presented, including the self-observation of one of the authors, in whom the administration of amifampridine as an "off-label use" led to a normalization of the unphysiologically increased need for sleep with a simultaneous increase in the Bell score. This effect was confirmed in a double-blind discontinuation trial (the medication was discontinued on a trial basis) in two of the patients. The five patients, who were previously unable to lead a normal life due to their fatigue symptoms, were able to return to everyday life after treatment with amifampridine. This offers hope to millions of affected patients.

https://www.cureus.com/articles/218...y-with-double-blind-discontinuation-trials#!/

 

[Dude]

Even Scheibenbogen tweetet this. Sound very promising. Wondering if it works for MECFS too.

https://twitter.com/i/web/status/1750811794128400763

 

[lyran]

So is this used to stimulate acetylcholine release or are there other mechanisms also?

Edit:

Amifampridine works by blocking potassium channel efflux in nerve terminals so that action potential duration is increased.[11] Ca2+ channels can then be open for a longer time and allow greater acetylcholine release to stimulate muscle at the end plate

Wasn't there issues with calcium channels in CFS/ME?

 

[SlamDancin]

I seem to require the exact opposite, reduced acetylcholine release at the endplate. I take Robaxin and it does seem to help

 

[Dude]

Wasn't there issues with calcium channels in CFS/ME?

I think you are referring to the Health Rising article.
https://www.healthrising.org/blog/2023/02/22/chronic-fatigue-syndrome-calcium-muscles-startup/

there has already been research on the topic, so it's not so far-fetched that it could work for cfs.

Several studies indicate impaired function of the muscarinic acetylcholine receptor in ME/CFS patients. For instance, experiments administering acetylcholine (ACh) through the skin to patients show that the enhanced tissue perfusion induced by ACh lasts longer in ME/CFS than in other conditions or healthy controls (Spence et al., 2004).

 

[Mary]

Well, this sounds interesting, but even if it works for ME/CFS, cost might be a limiting factor: $29,298 for 120 tablets!

https://www.drugs.com/price-guide/f...ridine) is a member,on the pharmacy you visit.

 

[Dude]

Another Success Story, from Bell 20 to nearly 100. However, probably without PEM symptoms.

https://twitter.com/i/web/status/1772631750679646691

 

[Dude]

I found some more success stories on Twitter regarding the use of this medication for Long Covid. According to a doctor who apparently treats Long Covid patients with it, the response rate is at 80%. I've ordered it now too, curious to see if it will have a similar effect on classical ME/CFS fatigue compared to Long Covid fatigue

 

[SWAlexander]

I've ordered it now too

Hope it works for you.
It didn't work for me in 2021 for Spinal Muscular Atrophy (SMA).

Amifampridine is used to treat Lambert-Eaton myasthenic syndrome (LEMS), a rare autoimmune disease, wherein the immune system attacks the connection between the nerve and muscle (neuromuscular junction).

 

[Judee]

@Dude, sorry for the thread sidetrack but can you tell me where you got this quote? What study? Can you link it for me? (I did try to find it on my own as well.)

Several studies indicate impaired function of the muscarinic acetylcholine receptor in ME/CFS patients. For instance, experiments administering acetylcholine (ACh) through the skin to patients show that the enhanced tissue perfusion induced by ACh lasts longer in ME/CFS than in other conditions or healthy controls (Spence et al., 2004).

I'm asking because I had a tilt table test last week and they did a QSART test first which involved applying acetylcholine to my skin and I think it suppressed my heart rate so that it wasn't as high as other times. For instance, I did a NASA standing test in my doctor's office last Fall. In that test my heart rate went up to 130 after 9 minutes of standing but with the TTT and the acetylcholine even after 20 minutes of standing, it stayed at 103.

The things I'm reading online about acetylcholine say it, "...is the predominant neurotransmitter in the parasympathetic nervous system. When your heart rate increases beyond what's normal, acetylcholine is released to slow your heart rate and contractions until it goes back to baseline."

Unfortunately, that means my heart rate didn't increase 30 points on the test (needed for POTS diagnosis) and may mean I won't be able to see the neurologist and go to the POTS clinic there even though my BP fell to 77/50.

I just thought if I had something to show that's how even topical acetylcholine affects us, it would sway them to allow me to.

 

[Dude]

@Judee I can't remember exactly, I think it was from the mepedia site. Here is a link to pubmed but only with the abstract. https://pubmed.ncbi.nlm.nih.gov/15041034/

 

[Judee]

Hey, that's a good link too and nice that it's short since most doctors don't really want to read long papers.

Thank you, @Dude !!

 

[Dude]

After 3 days, I'm unfortunately already noticing that it probably doesn't have any effect on me. According to other people on Twitter, the effect seems to kick in relatively quickly after the first dose, so I assume that longer-term use won't yield any better results. It's a shame, really, but if I had ME due to long Covid, it would likely be the first medication I'd try.