Phase III Rituximab Trial - News

Personally, I have no idea. But Lipkin's direct quote is

Code:

https://youtu.be/Rz9jaz350AI?t=11m43s

- copy and paste the link to be taken straight to the beginning of the quote in the video.

 

I think PEM is a term/symptom that we latch on to a little bit. I also think this can be present for other diseases (mitochondrial diseases? PA?). Crushing debilitating fatigue delayed following exertion can't be unique to one disease just doesn't seem logical (well to me anyway)

I also think that PEM means different things to different people and that this probably varies from person to person in terms of how it manifests itself.

I have the delayed sort 24-48 Hr and it has changed how it manifests itself (mainly cognitive now as oppose to crippling joint pain in the early days) and is much shorter lived than it used to be. I certainly haven't sprawled on a porch...but I haven't forced myself to crawl upstairs either? I think our stories are quite personal due to the nature of the disease but equally valid.

 

During Malmö conference , Maureen Hanson talked about the different outbreaks, and although the very same virus could trigger ME, people developed different subtypes (1:13)

https://www.youtube.com/watch?v=uWjJMzZTtvI

Anyway, we still don´t know

 

Ofcourse it can.

 

Just wanted to chime in to say I experience exactly the same thing, with a transitory reduction in symptoms before getting hit with full impact of a viral infection, I mean stuff like coughs and colds. Like you say, it is an improvement in cognitive function and sense of wellbeing, I’m more articulate in conversation, more likely to make social arrangements to catch up with friends or venture out of the house, which caught me out a few times before I recognised the pattern.

I too thought this might suggest some autoimmune or other aberrant immune activation process could be producing symptoms, which is temporarily interrupted by the immune system scrambling to deal with a new viral infection...

I also get everything going round, they are debilitating and last for weeks. The net effect is very much bad, but the prodrome is interesting and might lead to some insights into what’s going on, if anyone can work it out!

 

I would have thought real dedicated researchers fully appreciate that's the name of the game they have chosen. They now know one route to not waste their time on, thanks to good scientists honestly reporting their findings.

 

Dashed hopes can be such a b*gger.

 

Interesting thoughts re: Unrest, and I wanted to reply, but I know it is off topic, too, so will wait and reply in a future thread!

 

On the bright side, this guy made me laugh:
https://twitter.com/user/status/933197031027351552

 

Be interesting to know in due course if anyone comes up with a reason for this. Seems clear now there was no hoped-for causal link. Was it just pure chance? Was there some other correlation hidden within the trial's method or application, that gave the illusion of a causal link?

Do trials like this do any follow up, to try and understand such things, and maybe everyone benefit from further understanding of tenuous false positives? Or is that not usually viable?

 

I ponder this also. My wife, I now realise, is relatively lucky - as lucky as anyone can be having ME . She is mild/moderate I think, and has family to support her, emotionally as well as physically. But there are so very many people without that support. It's why I feel so incensed at the naff pseudo-scientists who in a sense are stealing good people's lives; and why I really do believe forum's like ours are so important, for the mutual support, as well as playing our part in striving for good science and good justice. Many people here are clearly very strong inside, survivors, but there must be so many people with little or no support at all, nor even awareness of the possibility of support.

 

I think @TiredSam was indulging in his special brand of wry humour.

 

Are you suggesting @TiredSam lacks empathy? .

 

It could conceivably be that only PwME exhibit PEM, but they may be a (majority?) subset, with other PwME still within the broader ME set, not exhibiting PEM.

 

No, I am suggesting that pain is subjective.

 

Does anyone know what the placebo was? It seems that since Rituximab is given via an IV, the placebo was probably saline. I personally respond very well to saline and wish I could find a doctor to prescribe it for me regularly (although I know that Dr. Edwards has claimed that there would be no benefit). What if the high placebo response rate had to do with the saline infusions. Do you think the research design accounted for that?

Lynn

 

I asked this question a week or so ago: do people with genetic mitochondrial disease experience pem thinking they didn't since exercise seems to be an accepted benefit but I got several responses saying that genetic mitochondrial disease can cause pem... but once again it probably comes down to how people interpret PEM... first of all, in my experience the term should be PES (post exertional shutdown) as for me all systems seem to shutdown to a level that just keeps me alive while trying to conserve as much energy as possible)...and second I am very glad that a lot of research is being aimed at trying to figure out what is causing the obvious mitochondrial disfunction in what appears to be a large subset of sufferers

 

I think Jo Edwards has previously said that the volume of rtx and therefore of saline is very low.

 

I agree that the saline infusions could have provided some short-term symptom relief, for 1 or 2 days. But the main endpoint for evaluation of clinical effectiveness was, what was it... at 6 months, or something? So, the way the trial outcome was designed I don’t think that would have been a confounding factor.

I also suspect Rituximab is difficult to blind and most patients would have had an inkling they were on it... Though I’ve not tried it, so don’t really know for sure. Did the placebo patients get exactly the same pretreatment meds to mitigate any infusion related reactions, and all that rigmarole? I guess so.