Why some people with ME/CFS react more strongly to medications

[Utsikt]

And not only PEM. Simply feeling worse can be awful when you already feel horrible. Why should anybody want to endure that when in most situations the medications probably aren’t of much use?

Some medications might be needed for non-ME/CFS reasons.

 

[rvallee]

I think this would be heavily selection biased no?
Those who are likely to sign up for heavy drug trials probably overlap very little with those who are very sensitive to meds.

I don’t think we can assume drug trial participants to be representative of pwME at large in this case.

Maybe a bias but probably not heavy. I think I do have a relatively stronger reaction, although most of it could simply be similar to how scratching a wound hurts more than scratching healthy skin, but it wouldn't be in the way of me participating in a trial. I wouldn't even think once about it.

Side-effects tend to be minimized in medicine. There is a lot of the bias like what we see in vaccine, trying not to discourage people from taking medication because of those side effects, and also way too much belief in the magical nocebo. It's just as probably that we are more aware and atuned to them, for a similar reason why a $100 parking fine hurts more when someone is broke vs when they have a good salary.

 

[Holinger]

What sort of negative reactions did you have, and did you react to anything other than alcohol and antihistamines?

I just felt twice as deplorable on those two substances where I could tolerate them normally before I had me/CFS. I go really pale on them which is really weird. One popular antihistamine/sedetive injection for a migraine caused an anaphylactic reaction which is probably a seperate thing.