Reduced Fatigue Symptoms in the Post-COVID Syndrome With Amifampridine: A Collective Casuistry With Double-Blind Discontinuation Trials, 2024,Boehmeke

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EndME

Senior Member (Voting Rights)
Reduced Fatigue Symptoms in the Post-COVID Syndrome With Amifampridine: A Collective Casuistry With Double-Blind Discontinuation Trials

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#!/
 
Wikipedia entry for Amifampridine.

Amifampridine phosphate has orphan drug status in the EU for Lambert–Eaton myasthenic syndrome and Catalyst holds both an orphan designation and a breakthrough therapy designation in the US. In May 2019 the U.S.
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In Lambert–Eaton myasthenic syndrome, acetylcholine release is inhibited as antibodies involved in the host response against certain cancers cross-react with Ca2+ channels on the prejunctional membrane. Amifampridine works by blocking potassium channel efflux in nerve terminals so that action potential duration is increased. Ca2+ channels can then be open for a longer time and allow greater acetylcholine release to stimulate muscle at the end plate.
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There was a small RCT Fampridine for LC that was recently completed (results still outstanding). Fampridine is 4-Aminopyridine, whilst Amifampridine is 3,4-Diaminopyridine (not that I'd understand what that actually means but here are their chemical structures). It seems Fampridine was initially used in LEMS and has now been replaced by Amifampridine which is supposedly more potent in improving neuromuscular transmission and less epileptogenic. On the other hand Fampridine seems to have efficacy in MS whilst Amifampridine doesn't. So there have to be some substantial difference I would assume.

The very strange part of the study is that they are all relatives. Patient 1 is the doctor himself, whilst the other 4 patients are his relatives. That would seem like an unusually high quote of LC patients within one family, unless there's some underlying genetic reason it wouldn't match any statistic on long-lasting LC. The description of the patients LC is also very lacking, it seems they all have a need for a lot of sleep, but no mention of something like PEM eventhough Bell scores are used. It's hard to tell whether fatigue wasn't confused with tiredness as the author seems to use these quite interchangeably
After a SARS-CoV-2 infection in April 2022, severe fatigue occurred, with sleep time being 16-18 hours/24 hours, and the Bell score was 10. Due to the refractory nature of the standard therapies for the suspected myasthenia gravis, treatment with amifampridine was initiated in August 2022 under differential diagnostic aspects. The fatigue ceased, and the sleep time was reduced to 8-9 hours/24 hours.
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The author and patient 1 has gone through some lengths though to test his idea and even had placebo capsules prepared by a wholesale pharmacy with the blinding being carried out by a colleague. I don't have sufficient knowledge of the drugs to say anything about whether that will provide sufficient blinding or whether the drug has side-effects that are easily noticeable.

He does seem extremely well intentioned though, hoping for change
Millions of people with PCS, for whom there is currently no adequate therapy, could then be effectively helped. As the author's (T.B.) LEMS disease is already at an advanced stage, it would be his most urgent wish to live to see this happen.
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I thought I would post here by an MD on X who treats pwME/CFS. He doesn't allow replies.

Fampridine is used off-label in ME/CFS and Long COVID patients with post-exertion-induced motor fatigue. As a voltage-gated potassium channel blocker, it improves axonal conduction and neuromuscular transmission in demyelinating or slowed pathways.

 
In some patients, fampridine may reduce motor post-exertional malaise and enhance physical function by improving central motor signals. Some patients report reduced limb heaviness and earlier return to baseline following activity.

Off-label use is guided by motoric PEM phenotype and parallels data from MS-related fatigue, where functional gains have been documented.

 
I'm not sure what he is describing is PEM.?

I've read that it helps pwMS 'walk quicker'.

I don't have issues with speed. On good days I actually pass people on my evening walks.
 
I looked up casuistry thinking it sounded like some sort of cushion embroidery.

My conclusion was that anyone who uses this word with reference to medical evidence is a ...head (fill in dots according to your taste). Is there any reason to take this seriously?
 
From his Xitter:
HabuS
@SHaberbusch
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Apr 28, 2024
Is it right that you have a questionnaire for those who try it?

Dr Thomas Boehmeke
@DrBoehmeke
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Apr 28, 2024
Yes - that is correct. How can I send you the sheet? Can you give me an email address?
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Jonathan Edwards said:
I looked up casuistry thinking it sounded like some sort of cushion embroidery.

My conclusion was that anyone who uses this word with reference to medical evidence is a ...head (fill in dots according to your taste). Is there any reason to take this seriously?
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It appears like the article might have been written in German first. The only thing I know about German is that they have a way with combining words. Might be how they ended up with «casuistry»?
 
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