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11/2/2017 at 3:0O pm (EST) - CDC ME/CFS Stakeholder Conference Call

Wally

Senior Member
Messages
1,167
MARK YOUR CALENDARS

November 2, 2017

3:00 pm - 4:00 pm Eastern Time

CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call
(*See Disclaimer about this call set forth)


Call number: 1-888-790-3251

Participant Code: 3287773

Contact for MECFS-SEC Conference Call: MECFSSEC@cdc.gov@cdc.gov


Please mark your calendars for the next CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Stakeholder Engagement and Communication (SEC) Conference Call.

_____________
Meeting Agenda

1) 3:00pm Welcome and Telephone Overview

2) 3:05pm - Updates from CDC – Elizabeth Unger, PhD, MD
Branch Chief, Chronic Viral Diseases Branch
Centers for Disease Control and Prevention


3) 3:15pm “Take Home Messages from the 2015 Institute of Medicine Report on ME/CFS”

a) Lucinda Bateman, MD
Founder and Medical Director of the Bateman Horne Center

b) Ellen Clayton, MD, JD
Craig-Weaver Professor of Pediatrics, Vanderbilt University Medical Center
Professor of Law, Vanderbilt University School of Law
Co-Founder, Center for Biomedical Ethics and Society

c) Peter Rowe, MD
Professor of Pediatrics, Johns Hopkins Children’s Center
Director, Children's Center Chronic Fatigue Clinic
4) 3:45pm Questions fro
m MECFS SEC Call Mailbox for Guest Speaker and CDC
_________


*Disclaimer about conference call: Although the content of calls is directed to patients, caregivers, health care professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.



Please note that questions for the Guest Speakers and CDC can be submitted only via email atMECFSSEC@cdc.gov. This mailbox cannot respond to inquiries received and is in use only for the scheduled MECFS-SEC calls. If you would like to be added to the call list, please send an email to MECFSSEC@cdc.gov.

Contact for MECFS-SEC Conference Call:

MECFSSEC@cdc.gov



 

Dolphin

Senior Member
Messages
17,567
cc258e0bda470816eaa11a36410746cd609fabff43d77912916fc4ffd343cdaa_1.jpg
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
MARK YOUR CALENDARS

November 2, 2017

3:00 pm - 4:00 pm Eastern Time

CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call
(*See Disclaimer about this call set forth)


Call number: 1-888-790-3251

Participant Code: 3287773

Contact for MECFS-SEC Conference Call: MECFSSEC@cdc.gov@cdc.gov


Please mark your calendars for the next CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Stakeholder Engagement and Communication (SEC) Conference Call.

_____________
Meeting Agenda

1) 3:00pm Welcome and Telephone Overview

2) 3:05pm - Updates from CDC – Elizabeth Unger, PhD, MD
Branch Chief, Chronic Viral Diseases Branch
Centers for Disease Control and Prevention


3) 3:15pm “Take Home Messages from the 2015 Institute of Medicine Report on ME/CFS”

a) Lucinda Bateman, MD
Founder and Medical Director of the Bateman Horne Center

b) Ellen Clayton, MD, JD
Craig-Weaver Professor of Pediatrics, Vanderbilt University Medical Center
Professor of Law, Vanderbilt University School of Law
Co-Founder, Center for Biomedical Ethics and Society

c) Peter Rowe, MD
Professor of Pediatrics, Johns Hopkins Children’s Center
Director, Children's Center Chronic Fatigue Clinic
4) 3:45pm Questions fro
m MECFS SEC Call Mailbox for Guest Speaker and CDC
_________


*Disclaimer about conference call: Although the content of calls is directed to patients, caregivers, health care professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.



Please note that questions for the Guest Speakers and CDC can be submitted only via email atMECFSSEC@cdc.gov. This mailbox cannot respond to inquiries received and is in use only for the scheduled MECFS-SEC calls. If you would like to be added to the call list, please send an email to MECFSSEC@cdc.gov.

Contact for MECFS-SEC Conference Call:

MECFSSEC@cdc.gov


Bump....CDC Conference Call starts in about two hours, today November 2nd./
 

Nielk

Senior Member
Messages
6,970
If you had sent in a question for this call and it wasn't asked, please pm me.
 

Kati

Patient in training
Messages
5,497
How was it? I missed it :(
Hi @Inester. To sum it all, it was business as usual. Things are moving very very slowly in the ME world especially at the government level. Dr Unger mentioned there will be a talk at a national public health conference where Dr Lily Chu, Dr Montoya and her will speak, I believe it is sometime next week.

The most interesting part of the talks was to hear Dr Rowe wondering why Kathy Rowe’s clinical trial (Australia, not related to him) on IVIG has never been replicated. (This was 20 years ago)

Dr Bateman seemed frustrated that patients butted heads about the name. Dr Clayton spoke about how neglected the patients were. There was no suggestions (as far as I remember) as to how to move the field forward. Dr Rowe said things need to happen outside the government level.

That pretty much sums it all for me.

There as a mention of the Unrest film and how a screening will be held in Georgia and Dr Unger herself will attend and be part of a panel. Promoting Unrest may well be our solace, that and the brilliant work of our researchers who constantly face the lack of funding.
 

Horizon

Senior Member
Messages
239
What I gathered from the call:

-CDC MECFS website will have a healthcare provider section. Almost complete.

-CDC MECFS site will have "patient voice" section with patient stories.

-CDC having Unrest showing for officials featuring Jen Brea.

-CDC request topic suggestions be emailed to mecfssec@cdc.gov

-CDC will offer continuing medical education with webmd, offered on medscape called "spotlight" for 1 yr credit.

-CDC will be present at forum with experts like Dr. Montoya

-CDC collaborating with other agencies on MECFS

-Cosponsoring common data elements project
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
The most interesting part of the talks was to hear Dr Rowe wondering why Kathy Rowe’s clinical trial (Australia, not related to him) on IVIG has never been replicated. (This was 20 years ago)

Agree @Kati.

And with competition among IVIG manufacturers-- CSL Behring, Shire, Grifols, Biotest Pharmaceuticals, Bio Products Laboratory, Kedrion, and Octapharma-- perhaps one of them might be interested in a clinical trial as Dr. Rowe is indicating is warranted.

Have patient organizations reached out to IVIG manufacturers about a trial, one wonders?
 

duncan

Senior Member
Messages
2,240
Not withstanding its use to prevent infection, I've often wondered why the implications of IVIG's success - even in immune dysfunction cases like Lupus - don't overtly suggest infections of some sort are at play.

Regardless, I believe pwME would still have to qualify for insurance coverage (at least in the US) by failing a vaccine challenge before coverage for the pricey IVIG therapy would be allowed.

Still worthy of a trial, obviously.