USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls)

The only section that mentions chronic fatigue is this

There is no mention of CFS.

 

I didn't know/remember this, but it seems as though the CDC's budget for CFS ($5.4M in 2019) was actually part of the budget of the National Center for Emerging and Zoonotic Infectious Diseases (NCEZID).

https://www.cdc.gov/ncezid/who-we-are/budget.html

 

CDC Team Takes ME/CFS Around the World
blog

rest of it here
https://blogs.cdc.gov/global/2020/05/12/cdc-team-takes-me-cfs-around-the-world/

 

https://www.federalregister.gov/doc...mitted-for-public-comment-and-recommendations

 

Thanks for posting, @Sly Saint. I was surprised to see this now given that the adult Multi-site study's data collection is done or at least near so and the pediatric study is well underway.

That said, it may provide an opportunity to comment on instruments that are not adequate, have possible ceiling/floor effects in more severe populations, are more burdensome than represented here, etc.

 

Good that the OMB will handle the analysis. It's a serious number-crunching institution that doesn't take sides. I'm hopeful they will produce a reliable assessment of the situation.

This requires more brainpower than I can muster, however.

 

I'm confused too. CDC has been funded to the tune of $5MM per year for ME/CFS and I thought that the multi-site studies are meant to be the prime focus of the work. The whole project does seem a bit of a black hole...... hope I'm wrong.

 

If I remember correctly, the CDC has published one paper so far - this 2017 paper, which was mostly a methods paper but discussed some findings as well. Findings were also reported in CDC's 2016 MECFS Grand Rounds. I expect other papers are in the works but no idea when these will be published.

CDC was still publishing papers on its 2005 epi study for a number of years after that. Dont remember when the last one was but it was not that long ago.

 

From an email

MARK YOUR CALENDARS


September 23, 2020

3:00 pm Eastern Time


CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

participants can call in using the following information:

Call number: 1-888-391-6584

Participant Code: 2051049



or join the meeting using the webinar format by clicking the link, or copying and pasting it into your browser.

https://adobeconnect.cdc.gov/ra1o95oszrnl/

If you have never attended an Adobe Connect meeting before, it is recommended that you test the connection before the call date:

Test your connection: https://adobeconnect.cdc.gov/common/help/en/support/meeting_test.htm

Get a quick overview: http://www.adobe.com/products/adobeconnect.html



https://www.captionedtext.com/client/event.aspx?EventID=4537637&CustomerID=321


Federal Relay

Event ID: 4537697



Meeting Agenda


Welcome and SEC Call Overview


Updates from CDC

Elizabeth Unger, PhD, MD

Branch Chief, Chronic Viral Diseases Branch

Centers for Disease Control and Prevention



“Immune Dysfunction in ME/CFS”

Maureen Hanson, Ph.D.

Liberty Hyde Bailey Professor in the Department of Molecular Biology & Genetics, Cornell University, Ithaca, New York



Questions for Guest Speaker and CDC



Disclaimer: 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.


If you would like to be added to the call list, please send an email to MECFSSEC@cdc.gov. This mailbox cannot respond to inquiries received and is in use only for the scheduled MECFS-SEC calls.



Reasonable Accommodation (RA)

CDC supports participation in all events by persons with disabilities. If you require a reasonable accommodation for a disability, please contact MECFSSEC@cdc.gov as soon as possible with details of your request.

 

https://twitter.com/user/status/1338499784861212674

 

From an NIH MECFS Information List email

MARK YOUR CALENDARS

May 13, 2021

3:00 pm Eastern Time


CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

Please NOTE the change in how to access the meeting.

participants can join the call using zoom by clicking on the LINK or copying and pasting it into your web browser.

https://cdc.zoomgov.com/j/1603630197?pwd=cHUvNlZtRU9QUmkyZFhjM2Jibjk5Zz09

When the Zoom page opens, click on the “launch meeting” button, enter your email address and name, then click on the “join webinar” button.

Participants can also join by telephone and call in using the following number: 1-669-254-5252


To ask a question during the meeting within the Zoom webinar platform, please:

• Click on the “Q&A” button.
• Type your question in the “Q&A” box.
• Submit your question.

Meeting Agenda

Welcome and SEC Call Overview

Updates from CDC

Elizabeth Unger, PhD, MD
Branch Chief, Chronic Viral Diseases Branch
Centers for Disease Control and Prevention


“Exercise Testing in the MCAM Study”

Dane B. Cook, PhD

Professor, Exercise Psychology
University of Wisconsin-Madison School of Education


Questions for Guest Speaker and CDC

 

I would like to ask a question during the webinar, but I'm not sure that I will be able to make it to the end.

If anyone else attends, could you please put in the following question?

"The CDC handouts on ME/CFS are helpful resources for improving communication between patients and clinicians, but they are only available in English. Can the CDC translate them into other languages or validate translations submitted by patients?"

 

From the few that I have attended, any questions are collated to be answered at the end no matter when they are asked, so if you can attend the start then you could submit it then?

 

The slides and a transcript of the May 2021 CDC ME/CFS Conference Call are now available.

Discusses the so far unpublished multicentre CDC study
https://www.cdc.gov/me-cfs/pdfs/CDC-MCA-exercise-study-508.pdf
https://www.cdc.gov/me-cfs/pdfs/SEC-transcript-May-2021-508.pdf

https://twitter.com/user/status/1432425270766620672

 

Interesting find:

https://twitter.com/user/status/1432445419057975299


Direct quote of relevant part, I assume this is the transcript document:

 

From the latest email notification from the CDC.


December 16, 2021

3:00 pm Eastern Time


CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

participants can join the zoom webinar by clicking this link:

https://cdc.zoomgov.com/j/1604731665?pwd=cmoyQllSQ0tmMVVWNFI0RDBEbUpIdz09

when the zoom page opens,

• click on the “launch meeting” button,
• enter your email address and name, then
• click on the “join webinar” button.

participants can also join by phone using one of the following numbers (when prompted, please enter the meeting id and passcode):

1-669-254-5252 or 1-646-828-7666

Meeting ID: 160 473 1665

Passcode: 00127230

International numbers available: https://cdc.zoomgov.com/u/amrAMO4Qb


Meeting Agenda

Welcome and Meeting Overview

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

Guest Speaker "Is ME/CFS Another Face of Long Covid?"

Hector Bonilla, MD, Clinical Associate Professor, Medicine - Infectious Diseases, Stanford University.

Question and Answer (Q&A)


To ask a question during the meeting within the Zoom webinar platform, please:

• Click on the “Raise Hand” button.
• Ask your question when prompted.

To ask a question during the meeting by phone, please:

• Enter *9 to add yourself to the queue.
• Ask your question when prompted.

 

Today.

https://twitter.com/user/status/1471191413182418946

 

Post copied from a NICE guidelines thread

FYI - CDC has posted the NICE Guidelines on its ME/CFS website, in the resources section for healthcare providers

https://www.cdc.gov/me-cfs/healthcare-providers/index.html#resources

Edit: I meant they posted a link

 

https://www.cdc.gov/me-cfs/pdfs/SEC-transcript-December-2021-508.pdf

 

A video recording is now available. It came out back in September, but I don't think it has been widely highlighted.

https://www.youtube.com/watch?v=4utGRlsrRCo