Dr Bieger and Dr Mikovits discuss treating ME patients with Rituximab

[Countrygirl]

Dr Bieger and Dr Judy Mikovits discuss treating ME patients with rituximab.

 

[rebar]

I am so impressed with Dr. Mikovits, incredibly informative. That was so worth the 37 min. it took to view. Countrygirl when was this recorded?

 

[Daisymay]

Thanks for posting, very interesting indeed.

 

[Countrygirl]

I am so impressed with Dr. Mikovits, incredibly informative. That was so worth the 37 min. it took to view. Countrygirl when was this recorded?

I think it was this week as she is on her way to the UK. In fact she will have landed this afternoon
.

Edited to say the video was made in December 2014

 

[Marky90]

incredible stuff

 

[nandixon]

@Jonathan Edwards
Professor Edwards, you've probably heard or read much of what Dr. Mikovits talks about, but it may still be interesting if you have a chance to watch the video.

For one thing, she seems to indicate (early in the presentation) that appropriate candidates for rituximab can be identified ahead of time. Would you be able to comment on what she says regarding that?

The idea that some ME/CFS/SEID might be an incomplete expression of certain types of cancer (or on a similar continuum) was interesting as well. (I think I've heard that before.)

The possible underlying retrovirus theory and treatment was also interesting.

 

[heapsreal]

wow interesting, thanks.

 

[Sidereal]

German dude said out of 10 patients he's familiar with, 8 got no benefit from rituximab and 2 got worse.

 

[Sushi]

German dude said out of 10 patients he's familiar with, 8 got no benefit from rituximab and 2 got worse

Yes, though Judy had some good ideas as to why that might be--subsets. That part was very interesting as she identified patient groups that she thought would and wouldn't respond and also recommended lower doses. I'd have to listen again but, as I remember, it had to do with NK cells and activity and levels of certain B cells.

Sushi

 

[Sidereal]

Yes, though Judy had some good ideas as to why that might be--subsets. That part was very interesting as she identified patient groups that she thought would and wouldn't respond and also recommended lower doses. I'd have to listen again but, as I remember, it had to do with NK cells and activity and levels of certain B cells.

Sushi

Yes, very interesting discussion indeed, but in the real world right now we have people doing a large trial on anyone with an ME/CFS diagnosis, a group which could also include people like the case the German doctor described of someone who ended up in a wheelchair after one RTX infusion and has not recovered since.

 

[catly]

I almost didn't read this thread, if it wasn't for the Rituximab reference I probably wouldn't have, but I have to say that was VERY INTERESTING! Thanks @Countrygirl for posting it. Very curious to hear other's take on the video. Also just want to say kudos to the 2 German doctors/researchers who really seem to be trying to find help for ME patients.

 

[catly]

One other interesting point, if I heard it correctly, is that one of the German MD said that there is now an oral form of rituximab???? It would be interesting if someone else could confirm or refute that since Dr. Mikovits also seemed unaware of it.

 

[NK17]

Thank you so much @Countrygirl for posting the video.
I had to stop watching it after a few minutes to thank you and also make the following comments:

1. One of the 2 German patients whose ME has deteriorated may be the former football player Olaf Bodden. @Freddy and @deleder2k have a bit more knowledge about his very unfortunate case and have posted about it here on PR. They might be very interested in this thread.

2. I think that recently the EMA (European Medicine Agency) has approved a subcutaneous Rituxan (Mabthera) on which @Jonathan Edwards has commented. I may be wrong, but I don't think that biologics/monoclonal antibodies can be administered orally.

Now I'll resume watching the video and try to extract as much info as possible.

 

[NK17]

Wow what an interesting video!
I need to watch it again and take notes.
Thanks again for posting it @Countrygirl.
By the way toward the very end one of the two German doctors mention the fact that his patient who severely deteriorated after only one Rituxan infusion was a professional athlete (Olaf Bodden).

 

[wastwater]

Could someone have a look at this on malacards,axenfeld riegers syndrome and the risk profile,top 20 conditions.

 

[nandixon]

@Jonathan Edwards
I went back and re-listened to the video and am writing here what Dr. Mikovits said about determining eligibility for rituximab:

She says that only ME/CFS patients whose CD20 and CD23 cells have "expanded" should get (low dose) rituximab. And she seems to be indicating that this was about 30% of the ME/CFS patients she worked with. (She said the rituximab dosage should be much lower than for treating cancer.)

I'm not clear if by "expanded" she's referring to a direct measurement of the number of CD20 and CD23 cells in blood, or if "expanded" refers to a culture (incubation) of "peripheral blood" that she mentioned.

Regarding the latter, she said they found that in 30% of patients that the CD20/23 cells would grow in culture unchecked (expanded?) and become "immortalized" and eventually a tumor (a "chronic lymphocytic leukemia") if the natural killer cells didn't "see" those cells and kill them. And that ME/CFS patients have an NK cell problem in this regard.

I haven't had a chance to read it yet, but there's a free pdf download of the pertinent chapter of the 2014 book Chronic Fatigue Syndrome, which is referenced while Dr. Mikovits is talking, on the following webpage:
Innate Immune Changes in the Peripheral Blood of Chronic Fatigue Syndrome Patients: Risk Factors for Disease Progression and Management (pp. 91-130)

Edit: Page 101 of the book/download explains some about CD20 and CD23, and rituximab.

 

[heapsreal]

If if heard correctly, mikovits says those with low nk function arent good candidates for rituximab as it knocks out too much of ones immune function. I take it that if you get rid of your antibody response too much, than ones nk cells, if they are functioning, could do the job.

Excluding Low nk function could possibly rule out alot of rituximab non responders but thats a big group? Maybe possible to have people on some type of nk booster prior and while under rituximab treatment?

also did anyone pickup on who will be ampligen responders?

if these issues can be worked out it will save alot of guess work, money and pain.

time to have a second listen.

 

[Jonathan Edwards]

I was really very surprised by this video. Dr Mikovits seems to indicate that she does not understand many of the most basic facts about B cells and rituximab.

She makes mistakes in almost every sentence. She gets the B cell markers (CD20, CD19, CD23) wrong and gets confused about B cell life history. She makes no comment when the physician claims that there is an oral rituximab, yet she should know that there is no oral form because rituximab is a large protein that is cleaved by pepsin and other gut enzymes. These are things that students know.

She appears to be making things up as she goes along when it comes to explaining mechanisms. Autoimmunity is mediated by autoantibodies and CD20+ B cells do not secrete antibodies, which in fact she admits but then says they cause autoimmunity! CD20+ cells are not expanded in ME/CFS. We have no evidence that there is abnormal cytokine production by B cells in autoimmunity. She makes inappropriate references to cancer. She gets the Fluge and Mella results wrong.

When she comes to giving advice, on misconceived grounds (‘Those are the 30% that should get rituxan but they should only get it at low dose.’) I think things are quite worrying. Someone with as little understanding of a medical field as this should not be giving advice to a clinician and making it public on video. I would hope that physicians will realize the advice has no basis.

 

[nandixon]

@Jonathan Edwards
Well, that's discouraging, but thank you!

 

[nandixon]

If if heard correctly, mikovits says those with low nk function arent good candidates for rituximab as it knocks out too much of ones immune function.

I can't listen to it again, but I think you may be thinking about where she was talking about the (inherent) risks involved with rituximab. And I'm pretty sure at one point she even says that someone with normal NK cell function would not be a good candidate for the drug.

So I believe she's thinking that increased numbers of CD20+CD23+ B cells and low NK cell function go hand in hand, and that people with ME/CFS who have that combination are the best candidates for rituximab (again, at a dose much lower than used for cancers).

Although I guess it doesn't matter much after what Professor Edwards said.