Discussion of patient self reported adverse effects of Rituximab

[Dial It In]

I regard that sort of message as unhelpful. The fact that a patient is doing well on rituximab does not mean they are doing well because of rituximab. I also worry when he refers to 'our own work'. That sounds suspiciously like playing around with the drug without proper methodology - pretty much like the PACE people did with CBT. The Norwegians who raised the issue of using rituximab in ME have consistently asked for others not to use it except in properly designed trials. A the person who introduced rituximab for autoimmune disease in general I feel the same.

Guessing is not good enough if people's lives are stake.

Didn’t Mella even state that he thinks there is a subset that it works on?

I tend to agree with the stratification issue - ‘MECFS’ is ridiculously broad

Anyway, we will get more of an idea when the data is released & the individual case responses can be examined against the equivalent placebo (if there were, in fact, 3 year long responses)

 

[Jonathan Edwards]

Didn’t Mella even state that he thinks there is a subset that it works on?

I tend to agree with the stratification issue - ‘MECFS’ is ridiculously broad

Anyway, we will get more of an idea when the data is released & the individual case responses can be examined against the equivalent placebo (if there were, in fact, 3 year long responses)

I think Olav Mella may have been trying to let people down a bit lightly. My information is that the trial is negative. No useful information will come from comparing subsets post-hoc with results. Comparing individual responses to placebo tells us nothing, of course. We need to stick to science here. That is what Olav and Oystein would want.

 

[Dial It In]

Interesting that at the current Invest In ME conference, Professor Maureen Hanson emphasised the heterogeneity within groups.

 

[Gingergrrl]

Interesting that at the current Invest In ME conference, Professor Maureen Hanson emphasised the heterogeneity with groups.

@Dial It In I haven't seen any of the conference but did Professor Maureen Hanson speak about Rituximab specifically (or about an autoimmune sub-group or misdiagnosed group)? I am curious what she said (but am not on Twitter or other places where it might be posted).