Livestream: Ron Davis to speak at Columbia University

John Mac

John Mac

Senior Member (Voting Rights)
Quest for a Diagnostic Test

OMF Scientific Advisory Board Director Ronald W. Davis, PhD, will be speaking at the Albert Einstein College of Medicine at Columbia University in New York on the progress and challenges of developing a diagnostic test for ME/CFS.
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Watch the presentation on Livestream on Thursday, November 21, 2019 at 7:30 AM Pacific Time / 10:30 AM Eastern Time / 3:30 PM London Time.

On Thursday, use this link to join the lecture: https://einsteinmed.zoom.us/j/746120765
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Anyone know if you can watch this after it has been streamed live?

Emailed OMF here's the response:
"We have requested a copy of the talk but we do not yet know if we will be receiving one. It is yet to be determined.



Thanks,



Debby Husch

Administrative Manager

Open Medicine Foundation

www.omf.ngo"
 
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I do not understand this.

The software appears to be designed for video conferencing and doesn't seem to work for me, as my system has no microphone and no webcam - as I do not wish to talk.

I have no video and no sound, no video window, nothing, just the app.
 
Wonko said:
I do not understand this.

The software appears to be designed for video conferencing and doesn't seem to work for me, as my system has no microphone and no webcam - as I do not wish to talk.

I have no video and no sound, no video window, nothing, just the app.
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If you just want to watch it should still work fine. Are you unable to connect to the meeting? I just connected in to it - the meeting ID is 746 120 765.
 
Andy said:
If you just want to watch it should still work fine. Are you unable to connect to the meeting? I just connected in to it - the meeting ID is 746 120 765.
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All I have, now, is a window with lots of little mostly black boxes on, with names in.
There is no sound or video.
This is not a 'livestream' as advertised - at least not as I have seen them previously.

ETA - apparently I do have audio, just very indistinct - the only word I have made out so far is 'thank you', and some sniffles
 
Wonko said:
All I have, now, is a window with lots of little mostly black boxes on, with names in.
There is no sound or video.
This is not a 'livestream' as advertised - at least not as I have seen them previously.

ETA - apparently I do have audio, just very indistinct - the only word I have made out so far is 'thank you', and some sniffles
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Yep, it just hadn't started. I just checked again, they now have a placeholder image up, and a box in the bottom right where Ron will presumably be shown once it starts.
 
Did anyone else listen in? I'm feeling frustrated after it! I don't even sense any urgency from Dr. Davis. The something in the blood is on the go since 2016. I'd have thought that would be more worthwhile investigating than still looking for infections and pathogens. It seems obvious that it's a hit and run on the immune system.
 
The comments by Ron at the end about it being one or many diseases, and accuracy of clinical diagnosis were interesting.

He thinks it makes sense to consider it one disease, even though we don't know for sure, because then the prevalence is higher and bureaucrats have no excuse to further neglect funding for it. He also said something about every patient having a unique illness if one were to be strict.

Edit: I now remember that he also said something along the line of what matters is being able to recognize the phenotype, treat it and help patients and he doesn't seem to think that we need to go deeply into subtyping to achieve that.

Regarding clinical diagnosis he says the doctors they are working with seem to be highly accurate in diagnosing patients. The self diagnosed patients sometimes have ME/CFS and sometimes they don't. In some cases patients were considered to not have ME/CFS based on judgment of staff (or doctor, I'm not sure) and the subsequent nanoneedle test was normal for them. So this illness doesn't seem to be that difficult to diagnose correctly.

This is the gist of what he said, as I understood it. There might be errors.
 
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Regarding infections and pathogens, they confirmed over a year ago that they didn't find DNA viruses more often in the patients than in controls. But what about RNA viruses, bacteria, fungi, protozoa etc? This was still not done in the last slide set I saw.

Indeed it seems to me that a lot of things have stalled, but maybe it just looks like that from the outside. Infections: not done testing. Metabolic trap: not confirmed in vivo. Something in the blood: still no idea what it is. Mark Davis T cell work: seems to not be relevant after all. Drug status: copaxone, SS-31 and suramin identified as potential candidates, but no news about trials starting.

To me it seems that there are ideas, but things don't get finished, probably due to lack of funding.
 
He thinks it makes sense to consider it one disease, even though we don't know for sure, because then the prevalence is higher and bureaucrats have no excuse to further neglected funding for it. He also said something about every patient having a unique illness if one were to be strict.
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Yup, IMO that’s why these people who spend all their time on twitter saying that they have the only “true disease” because they were infected by Enterovirus XYZ sub-strain 321 are not helping anyone, including themselves.
 
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