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Naviaux to Speak on CDC Conference Call May 25

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
CDC announces Conference Call with Dr. Naviaux speaking on "Metabolic Features of MECFS":

May 25, 2017

3:00 pm - 4:00 pm EDT

NEW CALL NAME


The CDC CFS Patient-centered outreach and communication activity (PCOCA) has been changed to

CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Stakeholder Engagement and Communication (MECFS-SEC)

Call number: 1-800-988-9482
Participant Code: 3242630


Meeting Agenda

3:00pm Welcome and Telephone Overview

3:05pm Updates from CDC – Elizabeth Unger, PhD, MD
Branch Chief, Chronic Viral Diseases Branch
Centers for Disease Control and Prevention

3:15pm “Metabolic Features of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)”

Robert K. Naviaux, MD, PhD
Professor of Genetics
Biochemical Genetics and Metabolism
Departments of Medicine, Pediatrics, and Pathology
Co-director, The Mitochondrial and Metabolic Disease Center (MMDC)
University of California, San Diego (UCSD) School of Medicine

3:45pm Questions from MECFSSEC@cdc.gov Mailbox for Guest Speaker and CDC
 

joshualevy

Senior Member
Messages
158
@joshualevy you had a question about Naviaux' metabolomics study right?

I had several groups of questions:

First had to do with p-values:
What level of p-value was considered significant?
How many metabolites were measured and how many were significant?

Second had to do with drug use:
What percentage of the patients were recruited from Dr. Gordon's practice as compared with elsewhere?
(If all or almost all of the patients came from Dr Gordon's practice, then don't bother with this question: ) Did you compare patients from Dr. Gordon's practice with those from elsewhere, and were there any differences?
Were patients who used opioids excluded from the study?
If not, was opioid use measured (or queried)?
If so, was opioid use correlated with any of the metabolites which were measured?

Third:
Where and how are patients for the second trial being recruited, and how is this different or similar to where and how patients were recruited for the first trial?

If it has not already come up, I would ask when they hoped to publish their follow-on results.

Fourth (and this one is completely optional, really tense, but maybe the most interesting):
Do you think it is a conflict of interest for someone to edit a scientific paper, which was written by a doctor who is actively treating a close relative of the editor at the same time the paper was written and edited?

(If I were going to do it, I would ask that last question, if possible, after the talk had been given, when the speaker is just hanging out answering questions from individuals. It's a reference to the correction that PNAS published to his paper. It will not make you any friends, but it is an interesting moral question.)
 

Nielk

Senior Member
Messages
6,970
eta: suramin trials? Just looking up this drug and it's current uses.

https://www.drugs.com/cons/suramin-injection.html


Suramin is used in the treatment of African sleeping sickness (African trypanosomiasis) and river blindness (onchocerciasis), infections caused by parasites. suramin works by causing the parasites to lose energy, which causes their death.

Suramin may cause serious side effects. Before you begin treatment with suramin, you and your doctor should talk about the good suramin will do as well as the risks of receiving it.

Suramin is administered in the hospital only by or under the immediate supervision of your doctor.
 

dancer

Senior Member
Messages
298
Location
Midwest, USA
I think the slides referred to "low dose suramin" so perhaps it's repurposing it's use in lower than normal (and not as toxic) dosage. I am confused/curious to hear about his theories for how this drug could address ME/CFS. The slides mention 50% of people live with chronic illness...but I'm not sure lumping how ALL chronic illnesses work is necessarily helpful. I'm not sure people get locked into heart failure, diabetes, arthritis, Lupus, MS, etc., through the same mechanism. But much of this is way over my head. I'm remaining ... curious at this point.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
So far it has taken them SIX YEARS to produce one graph that confirms what we already know: that ME is a physiologic illness not a mental illness.

Maybe in another decade they will have confirmed the work that Naviaux, Davis, Fluge & Mella, etc. have recently completed.
 

shannah

Senior Member
Messages
1,429
So far it has taken them SIX YEARS to produce one graph that confirms what we already know: that ME is a physiologic illness not a mental illness.

Maybe in another decade they will have confirmed the work that Naviaux, Davis, Fluge & Mella, etc. have recently completed.

These people (CDC) are so discouraging.
 

bspg

Plant Queen
Messages
547
Location
USA
Wow. That presentation was amazing! It makes so much sense.

Does anyone have the desire/ability to write up a synopsis for the forums? I would volunteer but I was late to the call and didn't get all the info. I'm happy to help anyone who is interested.
 
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