Rituximab: what recovery level is possible?

[Perrier]

Having heard only sporadic stories in the media, I'm wondering if anyone has information about the kind of recovery Fluge and Mella saw.

1) how many were able to go back to pre-disease level of life? Working, exercising, etc.

2) what became possible for the majority of patients?

 

[Esther12]

It's probably worth waiting for the release of results for the multi-centre RCT (which they're just analysing now, and should be released next spring). There have been reports of individuals reporting full recovery... but it could be that was unrelated to their use of rituximab.

Fingers crossed. The anecdotal evidence we've had over the last few years has been pretty mixed, and not as positive as you'd expect if it was that the majority of patients gained a major improvement in health, but it's hard to say. Hopefully, if there is a positive result for the RCT, they will be able to work out how to objectively identify those patients most likely to benefit in advance of treatment.

 

[Jan]

We are all pretty desperate to find this out but it seems we have to wait until next year.

 

[Perrier]

We are all pretty desperate to find this out but it seems we have to wait until next year.

Desperate is the word, indeed!
But what about the previous two studies. Any info there?

 

[Scarecrow]

But what about the previous two studies. Any info there?

Here's some step count data from some of the responders in one of the earlier trials:

http://forums.phoenixrising.me/inde...tential-of-rituximab.38487/page-3#post-614647

You should find plenty of discussions on the previous trials on PR. This site's a bit new.

 

[Scarecrow]

@Perrier , I forgot about the Library here!

@Cheshire has kindly provided a list of articles and links:
https://www.s4me.info/index.php?threads/Øystein-fluge-and-olav-mellas-me-cfs-research.183/

 

[BurnA]

Desperate is the word, indeed!
But what about the previous two studies. Any info there?

There is a table in one of the previous studies which lists the response of all participants.
I think it's Table 1 here

It was fairly mixed, But just read the paper there is a lot of info in it.

 

[Esther12]

Desperate is the word, indeed!
But what about the previous two studies. Any info there?

Enough positive info that it's worth funding a large trial, and to feel a bit hopeful about it, but it hard to say much more than that.

 

[Gingergrrl]

@Perrier , I forgot about the Library here!

How do you find the "Library" and is it articles that anyone can read? Sorry for another question!

 

[Scarecrow]

How do you find the "Library"

It's the Science Library in the ME/CFS News and Research sub-forum. Here's a link:

https://www.s4me.info/index.php?forums/science-library-read-only.67/

and is it articles that anyone can read?

Yes. Free access. No fines for late return.

Sorry for another question!

No need to apologise. We're all here to help each other!

 

[Scarecrow]

is it articles that anyone can read?

Actually, you might find that some of the links are pay-walled.