Discussion in 'Phoenix Rising Articles' started by Simon, Sep 3, 2013.
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Thanks for the nice summary. I'm just about keeping up with the Rituximab discussion thread, but for anyone who hasn't been reading it as it grew, it's now a few hours worth of reading!
Great article - some very interesting responses to well thought out questions.
Prof Edwards said "There is no good scientific reason for requiring these numbers but all regulators like rules. I think it may be largely a safety issue. I think a good small study can take the science forward. I also think it would be wrong to recruit more patients than we need for a specific purpose."
Other researchers have indicated a preference for larger studies (with a well-defined population) to better distinguish efficacy signals....
How does one determine the correct size for a study? Large enough to detect signal but not so large that it is not financially feasible?
From my understanding on what has been said in the thread with Professor Edwards: a UK study would approach the problem of why this drug works and attempting to connect the data B-cell problems obtained by Dr. Bansal to the Norwegian studies involving rituximab and then attempting to understand more about the disease mechanism and driving research forward - whereas Fluge and Mella seem to be further testing how effective the drug is and whether such an improvement can be maintained (ie whether rituximab is a viable treatment) which requires a larger cohort.
I think its great we have people like Professor Edwards looking into this illness for us.
It's fantastic having Prof. Edwards here. !!
I have to go back and read through the whole Rituximab discussion thread again. There was so much amazing reading there ! Links to look at.
Thanks everyone for your input and Prof. Edwards.
Thanks Prof Edwards and Sushi for this.
This is absolutely fantastic that he is taking his time to do this. It is such a dynamic advantage to us as it gives some transparency to the study in the sense that it lets us gain some knowledge as to what is being looked for in a broad sense and then how it may progress even further as Professor Edwards may or may not pick our brains or read our post that may change the roadmap of the study as it unfolds. I'm sure the impacts would be very minor, but it would be nice to pick up subtle hints in the final study that somehow relates back to his conversations from the forum.
I think being as positive as possible and keeping conversations with him to the point would go far in getting any chance that he has the slightest inclination that depression is playing any type of role in this disease out of his right of the bat.
It does seem to appear though that some of the previous studies qualified data is something he doesn't have knowledge of, which is ashamed as we have beat the drum for years to get all the data in a place that it can be easily referenced.
It would be really nice if we could get, even if it is a small amount of information from the CFI study. The least bit of transparency can settle impatience when it's their butt in the fire!
As far as I know this is the first time some one has taken the time to extend an open ear to listen and explain what might be accomplished out of the study. It would probably be bordering on ethics rules, but it would be nice if anyone that's able to put in a dollar or two and may get him a gift card to an eatery or etc. That may also make others feel a little slapped in the face, so maybe not a good idea!
I would like to say a BIG Thank You to Professor Edwards. Those of us suffering from ME need caring people like you in the medical profession
Thanks to Sasha - and Jonathan Edwards for a great article. I'm afraid I havent' been able to keep up with the Rituximab thread so appreciate the update all the more.
Please prove yourself wrong Professor Edwards. I wish your research team a most efficacious outcome!
It is very instructive to compare this article with the recent article on the CFSAC committee.
There's an old saying in the labor movement (what's left of it): "Direct Action Gets the Goods!" Funding and promoting the Rituximab study is an example of direct action. The CFSAC committee is an example of how begging for crumbs leads to starvation.
Personally, I'm tired of being hungry...
Thanks Sasha, and Prof Edwards, for an interesting interview.
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