Are there any effective treatments?

Split thread

Er,... Valcyte, Valtrex, Ampligen, oxymatrine, tenofovir, low-dose naltrexone, GcMAF, Pridgen protocol (for fibromyalgia).

 

And if you had made this list half a year ago Rituximab would have been on the list. There is absolutely not enough evidence at this moment to conclude that any of these provide an effective treatment of ME/CFS.

 

True, but that does not imply patients are not benefiting from these treatments.

Formal evidence is not there because even when promising ME/CFS treatments are developed, nobody bothers to take it further and perform a large-scale clinical trial.

For example, Martin Lerner's blinded randomized placebo-controlled trial treating 27 Epstein-Barr ME/CFS patients with Valtrex culminated in improvements over placebo at 6 months. That study was published in 2007, but nobody has performed a replication study in the intervening decade.

Rituximab is still being used as an ME/CFS treatment in Norway by the way; although we know the response rate is low and the risks of serious adverse effects seem significant.

 

Are patients in Norway made aware of the risks before being treated?

 

I don't know. We know in Whitney Dafoe and Olaf Bodden there was a significant worsening of ME/CFS, so that's one adverse outcome that can occur.

 

But is it just speculation as to the apparent cause? Coincidences and all that?

 

I don't know the exact circumstances, and I think timing of events is important in allocating cause: if these patients were stable for many years in their ME/CFS, and then right after the infusions became severely worse, that would suggest a causal relationship.