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Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Livestreamed videos available from the OMF's Facebook page.

WARNING - Due to, probably, being recorded on a phone, the sounds levels are very low, to hear anything you'll need to turn it way up and there are parts where there is sudden louder noise, so if you are sensitive to noise, be very careful.

https://www.facebook.com/OpenMedicineFoundation/videos/956825444421877/ - Ron starts talking at 37 minutes in if you wanted to skip to him.

https://www.facebook.com/OpenMedicineFoundation/videos/956878351083253/ - shorter video, a Q&A session
 
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greeneagledown

Senior Member
Messages
213
Sidereal said:
http://forums.phoenixrising.me/inde...ss-treating-me-patients-with-rituximab.35955/

That information comes from the linked video (which, as discussed in that thread, contains mostly gibberish).
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Thanks. I would consider the two trials the Norwegians have completed to be a lot more reliable than that informal report. Regarding those 10 patients, we have no idea what case definitions (if any) they met, how severe their ME was, how many infusions they were given, and how long they were followed.

I don't think we have enough evidence yet to conclude that Rituximab is effective in CFS, but I think there's even less evidence supporting the conclusion that Rituximab is NOT effective in CFS. The only completed trials to date have been successful.
 
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Gijs

Senior Member
Messages
691
Thinktank said:
@Gijs is Dutch, he's born pessimistic. ;) J/k.
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Not all. Just realistic. With XMRV they said the same thing :) If Fluge and Mella can't identify (objective) the positive responders, rituximab will never be used for CFS/ME as a treatment. Also 2/3 is much much to positive, i think 20 -30% will respond to this drug but that would be great! We will see next year.
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
I would assume the autoimmune subgroup or those w/autoimmune diseases similar to ME/CFS would be most likely to benefit from RTX. Did they say anything about this? I am thinking those with autoimmune POTS antibodies from the Charite or Cell Trend tests would be in the responder group?
 
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Gijs

Senior Member
Messages
691
Gingergrrl said:
I would assume the autoimmune subgroup or those w/autoimmune diseases similar to ME/CFS would be most likely to benefit from RTX. Did they say anything about this? I am thinking those with autoimmune POTS antibodies from the Charite or Cell Trend tests would be in the responder group?
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I totally agree -:)
 
BurnA

BurnA

Senior Member
Messages
2,087
Ben Howell said:
Great videostream.

Technology that Dr Davis was talking about is mindblowing.


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Yes, exciting. potential assay in the works, needs to be verified although he does point out that hopefully there will be easier ways in future.

Heard him say at one point in response to a question, he didn't want to talk about something because it was too early, did anyone get that bit ?

Apart from the guy who kept interrupting the was a great talk.
It's only through talks like this will we know what's going on because Davis is so far ahead of everyone else when it comes to technology. It's good he lives in Silicon Valley!
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
Freddy said:
I would like to ask of a link, source, for that... as @greeneagledown did.
You are talking of the Charite in Berlin? Just very curious.
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The information comes from Dr Carmen Scheibenbogen in Berlin. It has nothing to do with the Beiger interview although it may have been mentioned there. I am fairly sure there is no publication but the information has been shared with the research community. I agree that we do not know much about inclusion criteria but I doubt these are a major issue. Some cases were very unwell even if not strictly in the severe category (which did not give good responses in Norway).

Although I very much hope the phase III rituximab study is positive I think we should still be cautious.
 
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greeneagledown

Senior Member
Messages
213
Jonathan Edwards said:
The information comes from Dr Carmen Scheibenbogen in Berlin. It has nothing to do with the Beiger interview although it may have been mentioned there. I am fairly sure there is no publication but the information has been shared with the research community. I agree that we do not know much about inclusion criteria but I doubt these are a major issue. Some cases were very unwell even if not strictly in the severe category (which did not give good responses in Norway).

Although I very much hope the phase III rituximab study is positive I think we should still be cautious.
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Thanks for the information. Any thoughts on possible explanations for the discrepant results, other than randomness?
 
Ben H

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
BurnA said:
Yes, exciting. potential assay in the works, needs to be verified although he does point out that hopefully there will be easier ways in future.

Heard him say at one point in response to a question, he didn't want to talk about something because it was too early, did anyone get that bit ?

Apart from the guy who kept interrupting the was a great talk.
It's only through talks like this will we know what's going on because Davis is so far ahead of everyone else when it comes to technology. It's good he lives in Silicon Valley!
Click to expand...

Yes. Dr Davis pointed out potential caveats and that it may just be a artifact etc. But hopefully he is right and the technology is astounding regardless.

Its the way Dr Davis thinks. Totally different to any other researcher I know of.

Yes the interruptions were not ideal!


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Ben H

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
ash0787 said:
wow I thought his " blood microchip " thing would be way more complicated to understand than that,
pretty sure anyone could understand how it works if they have a basic understanding of science.
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It is complicated from a physical perspective. Dr Davis just has a gift of explaining difficult things in simple terms. Its 18nm technology for a start (v small!). But Dr Davis did say that it doesn't need to be so complicated, its what they have at the moment. Hopefully in future it will be less complicated. (To paraphrase).


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Gijs

Senior Member
Messages
691
Jonathan Edwards said:
The information comes from Dr Carmen Scheibenbogen in Berlin. It has nothing to do with the Beiger interview although it may have been mentioned there. I am fairly sure there is no publication but the information has been shared with the research community. I agree that we do not know much about inclusion criteria but I doubt these are a major issue. Some cases were very unwell even if not strictly in the severe category (which did not give good responses in Norway).

Although I very much hope the phase III rituximab study is positive I think we should still be cautious.
Click to expand...

I don't hope that many people find you pessimistic now professor Edwards -:) . In science it is not uncommon not publicate negative findings but i don't have to tell you that. In that cohort there was a man who ended up in a wheelchair after rituximab and didn't recover anymore. The positive thing about the findings of Fluge and Mella is that i believe in serendipity maybe rituximab will lead to a better understanding of this disease. They dig deep in their research that is positive but nothing have been found yet.

Also with the mitochondria's nothing wrong. I know of an unpublished study in which muscle biopsies were taken, there was nothing found. The low metabolic state is totally different in what i know from ATP production problems, so i think Naviaux findings will end up to be due to something else, it is not the key either. Sorry if i am to pessimistic again people :)

My favorite is VanElzakker, the parasympathetic nervoussystem is broken.
 
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