Has anyone personally found NSAIDs useful for management of PEM symptoms other than pain? Or have there been any studies done on this?
I am wondering about the potential for reduction of neuroinflammation using this class of drugs, although some cursory research suggests a fairly high dose would be needed to achieve protection against neuroinflammation and would need to be obtained on prescription (e. g. nurofen wouldn't be strong enough).
Until recently I haven't been allowed to take NSAIDs due to being on steroids, so I haven't had an opportunity to find out what effect it might have on PEM symptoms.
emsarah last edited by emsarah
@river I've heard some people on the 25% of ME FB group talk about using them for that purpose.
I went back through the post in their guide - Rebecca Weger is one of the admins and she uses that and di-ribose to reduce PEM but she didn't have a study as such to back that up, more so she felt PEM was inflammation based.
I can't find the other post I read but I think I remember someone saying they used it more for PEM caused by physical exertion rather than mental/emotional.
@emsarah thank you, that's really helpful!
I found some nurofen and took it a couple of hours ago but I don't think it's made any difference. Most of my PEM is induced by cognitive exertion or stress these days (as I'm good at avoiding physical over exertion) and unfortunately it seems a lot harder to find meds that help with that
It's an interesting though @river I investigated this with my GP a whiles back (start of last year, or maybe the year before? My memory is really bad with the sense of time) - apparently (and bear in mind this is me trying my best to remember a conversation at least 20 months ago, so it could be all entirely wrong, or even potentially the complete opposite....) most don't cross the blood-brain barrier - so we tried with something that apparently did, and it made me significantly worse for a month, and it got put into the basket of "well, we gave that a go". That doesn't mean it's not worth further investigation for a second though - just sharing experience in case it helps provide a slightly broader base to work from.
I have heard "buzz" about di-ribose, it comes as @emsarah mentioned - it comes up in conversations a bit, but I'm not aware (bearing in mind this doesn't necessarily mean anything) of any science to back it up.
@daffy_dave that is interesting, thanks for sharing your experience!
Bit off topic but for the record I already use d-ribose and have had modest success with it
emsarah last edited by
@river no worries! Yes I agree physical pacing is way easier than cognitive.