USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

Sasha

Sasha

Senior Member (Voting Rights)
This thread includes posts on general news from the CDC and ME/CFS news including stakeholder calls. Several threads have been merged.

CDC(?) said:
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 from 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
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Transcript now available
Our guest panel presentation today is “Take Home Messages from the 2015 Institute of Medicine Report ME/CFS” by Drs. Lucinda Bateman, Ellen Clayton, and Peter Rowe. First we will hear from Dr. Elizabeth Unger, who will provide updates about the CDC's MECFS program. After Dr. Unger and our guest panels speak, we will answer questions submitted via email. I will first read the questions out loud and then our speakers will answer each one
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https://www.cdc.gov/me-cfs/pdfs/MECFS-SEC_11-2-2017-508.pdf
 
Where is the CDC recommendation for rest and pacing? Isn't that what children need to have any hope of recovery?

ETA: "limiting physical activity" is along those lines, but I feel it needs to be emphasized more that substantial rest is needed and to avoid the push/crash cycle.
 
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CDC updated its "Information for Health Professionals" page in its ME/CFS section on Dec 15. The page now offers links to the following documents:

- IOM report (& the supplemental documents)
- IACFSME Primer
- 2016 Canadian guideline (draws heavily on both the IOM report and IACFSME Primer)
- 2017 Paediatric Primer

I'm not sure how many of these were on the page before the update, but it's great to see CDC drawing on good quality documents! :)
https://www.cdc.gov/me-cfs/healthcare-providers/index.html
 
Webdog said:
The page still says "New content coming end of 2017." If so, they will have to publish it over the weekend. :rofl:
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I noticed that too. Given that the page was updated on Dec, it's unclear whether there is more to come, or whether the Dec 15 update was the new content referred to, and whoever updated the page just forgot to remove that sentence. I'm inclined to think it's the latter.
 
Webdog said:
Where is the CDC recommendation for rest and pacing? Isn't that what children need to have any hope of recovery?

ETA: "limiting physical activity" is along those lines, but I feel it needs to be emphasized more that substantial rest is needed and to avoid the push/crash cycle.
Click to expand...

I agree. It's good that this fact sheet doesn't emphasise the need for exercise, pushing through, or challenging false illness beliefs, but there isn't enough emphasis on the importance of rest and pacing, and it doesn't convey how severely unwell some may be (ie: attending school may be out of the question for some).
 
Simone said:
I noticed that too. Given that the page was updated on Dec, it's unclear whether there is more to come, or whether the Dec 15 update was the new content referred to, and whoever updated the page just forgot to remove that sentence. I'm inclined to think it's the latter.
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I agree with you.

Still, the page gives the impression that after nearly a year of "working" on this, the CDC just threw up some links to external sites and didn't even bother to proofread the page. Minimal effort expended.

On the plus side, they aren't bad links.
 
@Webdog and @Simone - the CDC was originally planning on providing additional material for health case providers by the end of 2017 but I understand this material is now coming sometime in early 2018.

As far as this page - not sure but I think they might have added in links to individual parts of the IOM report. They also added the announcement of the public review period of the common data elements project
 
Medfeb said:
@Webdog and @Simone - the CDC was originally planning on providing additional material for health case providers by the end of 2017 but I understand this material is now coming sometime in early 2018.

As far as this page - not sure but I think they might have added in links to individual parts of the IOM report. They also added the announcement of the public review period of the common data elements project
Click to expand...

Thanks for the info - and welcome over to S4ME!
 
Medfeb said:
@Webdog and @Simone - the CDC was originally planning on providing additional material for health case providers by the end of 2017 but I understand this material is now coming sometime in early 2018.
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Thanks for the info.

If I recall correctly, the CDC update material was scheduled to be available summer 2017, then delayed to end of 2017. Now it’s early 2018?

Why the continued delays?
 
Andy said:
In case it helps to determine what has been added and what hasn't, this is a link to how it looked on the 9th December 2017 - https://web.archive.org/web/2017120...dc.gov/me-cfs/healthcare-providers/index.html
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The Wayback Machine doesn't mention summer 2017, only end of 2017. Thanks for the link, @Andy.

That should settle it, and yet...

A PR forum post by medfeb states "So far, the update is just the page for the general public. The healthcare providers version to follow this summer."

http://forums.phoenixrising.me/inde...page-updated-30th-may-2017.52703/#post-872664

But I don't know where medfeb got their info either. A mystery indeed.


PS: The Internet Archive (home of the Wayback Machine) is very close to me, and its founder, Brewster Kahle is very well known for hiring the disabled. He recently got an award at San Francisco City Hall for his efforts.
 
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