Open What questions should a PwME ask if they're considering entering a treatment trial? (specifically Lindus Health ReMEdi trial)

Kitty said:
So if it is amifampridine, it's a potentially interesting area of research—the drug is used to treat an ion channel disorder—but I'd still like to know the details of the theory underpinning the experiment.
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And given that acetylcholine which has come up various times, so I can see it being possible there’s a mechanistic theory. But I can’t help but feel it’s a bit more of a punt…
 
hotblack said:
But I can’t help but feel it’s a bit more of a punt…
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Yes, me too, and one that could very well have the opposite effect to that intended.

Everything I've read about ion channel disorders suggests the effects on muscle can be caused by vanishingly small imbalances in flux. Not sure I'd volunteer to have someone meddle with it without some confidence they knew what they were doing.
 
hotblack said:
And given that acetylcholine which has come up various times, so I can see it being possible there’s a mechanistic theory. But I can’t help but feel it’s a bit more of a punt…
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It's strange that they don't release more information.

After all, there is already Thomas Boehmeke's very small study group:

E

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

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...
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I find the overlaps between LEMS symptoms and ME/CFS symptoms according to Wikipedia interesting!

"Three-quarters of people with LEMS also have disruption of the autonomic nervous system. This may be experienced as a dry mouth, constipation, blurred vision, impaired sweating, and orthostatic hypotension (falls in blood pressure on standing, potentially leading to blackouts)."

In LEMS, too little acetylcholine is released. In the autoantibody theory for ME/CFS, acetylcholine receptors are blocked, among other things, correct?

If that were the case, increasing the release could possibly alleviate the symptoms, right?
 
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