Dr Oystein Fluge presents at InvestinME conference on Rituximab research and future plans

[Murph]

This speech goes over the history of Rituximab in ME/CFS but it includes a few choice tidbits too.


1. They have an upcoming paper on endothelial function in the RituxME patients. I remember they once showed a slide showing changes in "flow-mediated dilation" and I have always subscribed to a blood flow theory so I'm excited by this. Any research on blood flow overlaps with the OMF red-blood cell work too.

2. They are running pilot study with exercise monitoring. (22 min) to try to find better end points that they could use for a new trial, rather than just self-reported measures.

3. In trying to explain why Rituximab does not work for the average patient, he wonders if the disease is perpetuated by autoantibodies from mature plasma cells, that are not affected by Rituximab, like Lupus. if they do another Ritux trial they will use a different selection criteria than Canadian criteria, perhaps a laboratory test.

4. The Cyclophosphamide trial data will be published in 2019. If you want my interepretation, when he puts an exclamation mark after the words Interesting data, like this:

Interesting data!

it means the preliminary results show it is effective. The problem being that it was an open-label trial like the early Rituximab trials. His slide says:

Open-label design and no placebo group = no firm conclusions.

So, hope persists!

 

[Diwi9]

It looks like the video has been taken down, so your notes are very helpful. The fact that some ME/CFS clinicians continue to use rituximab in select cases (and I have had multiple friends benefit from it), means that there is some purpose for this treatment intervention for some ME/CFS patients. One trial should not shut the entire investigation down, it remains a clue into the underlying problem or sequelae.

 

[Avena]

It looks like the video has been taken down,

Try a different browser. I get the message “video unavailable” in safari (iphone), but can still play the video in chrome.

 

[ljimbo423]

It looks like the video has been taken down

I get this error message. If I click on "watch this video on youtube" though, it works.

Video unavailable
Watch this video on YouTube.
Playback on other websites has been disabled by the video owner.

 

[Gingergrrl]

This speech goes over the history of Rituximab in ME/CFS but it includes a few choice tidbits too.

The video did not work for me but I really appreciate you posting it and summarizing it @Murph!

In trying to explain why Rituximab does not work for the average patient, he wonders if the disease is perpetuated by autoantibodies from mature plasma cells, that are not affected by Rituximab, like Lupus.

Is science/medicine currently (in general) able to distinguish between autoantibodies that are from "mature plasma" B cells vs. other kinds? Meaning if they had a list of various autoantibodies, do they know where in the B cell cycle (for Ritux and other drugs) each one would match? I hope my question makes sense like it does in my mind!

if they do another Ritux trial they will use a different selection criteria than Canadian criteria, perhaps a laboratory test.

Did Dr. Fluge say that they might do another trial using other criteria than the CCC? Also, did he say what the laboratory test would be?! Would it be a specific autoantibody or group of autoantibodies?

Do you know if he or Dr. Mella have ever explained the discrepancy in Rituximab dosing in the final trial (in which all subjects received 500 mg of Ritux for doses 3-6 regardless of their body surface area) which was different than the Phase 2 trials. To me this is a major confounding variable and I wish he would some day address it.

The fact that some ME/CFS clinicians continue to use rituximab in select cases (and I have had multiple friends benefit from it)

I had the same experience and it gave me my life back.

One trial should not shut the entire investigation down, it remains a clue into the underlying problem or sequelae.

I totally agree as well.

 

[CFS_for_19_years]

I get this error message. If I click on "watch this video on youtube" though, it works.

Same here.

 

[Murph]

Did Dr. Fluge say that they might do another trial using other criteria than the CCC? Also, did he say what the laboratory test would be?! Would it be a specific autoantibody or group of autoantibodies?

He did not say. I get the feeling it's more that he hasn't given up than that he has an actual plan for another study.