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

The only section that mentions chronic fatigue is this
For instance, funding for its National Center for Emerging and Zoonotic Infectious Diseases—which aims to prevent diseases like Ebola—received only $514 million in 2018, a tiny sliver (less than 5%) of total CDC funding. And less than half of that $514 million went to emerging diseases like COVID-19. The rest of that budget is spent on stuff like chronic fatigue.
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There is no mention of CFS.
 
CDC Team Takes ME/CFS Around the World
blog
Chronic fatigue syndrome, also known as myalgic encephalomyelitis and referred to as ME/CFS, is a debilitating illness that takes away the active lives of people who suffer from it. Between 17 – 24 million people worldwide are thought to have ME/CFS and, in the United States, this illness may affect up to 2.5 million Americans. ME/CFS affects people of all ages and races, and is more common in women than men. The Institute of Medicine reports that patients with ME/CFS are more functionally impaired than people with diabetes, rheumatoid arthritis, and hypertension. ME/CFS is a recognized illness in many countries and regions beyond the United States, including the United Kingdom, Scandinavia, Australia, the Netherlands, Canada, Japan, India, and China.

Dr-Unger-MECFS-1-246x300.jpg

Dr. Elizabeth Unger at the CFS/ME International Conference: Research, Innovation, and Discovery, Queensland, Australia, 2018. Photo by Vivienne Hughes.
The Centers for Disease Control and Prevention (CDC) reports that ME/CFS is a significant public health problem in the United States. But you may be surprised to learn how CDC contributes to the global fight against ME/CFS. Dr. Elizabeth Unger, head of the ME/CFS program at the CDC, describes how her team’s work impacts ME/CFS outside the United States.
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rest of it here
https://blogs.cdc.gov/global/2020/05/12/cdc-team-takes-me-cfs-around-the-world/
 
SUMMARY:
The Centers for Disease Control and Prevention (CDC), as part of its continuing effort to reduce public burden and maximize the utility of government information, invites the general public and other Federal agencies the opportunity to comment on a proposed and/or continuing information collection, as required by the Paperwork Reduction Act of 1995. This notice invites comment on a proposed information collection project titled Multi-site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM). This collection is designed to assess and characterize illness heterogeneity of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and uses a standardized approach including standardized protocols with standardized tests and instruments to collect data on patients from multiple clinical practices.

DATES:
CDC must receive written comments on or before October 2, 2020.

ADDRESSES:
You may submit comments, identified by Docket No. CDC-2020-0086 by any of the following methods:

  • Federal eRulemaking Portal: Regulations.gov. Follow the instructions for submitting comments.
  • Mail: Jeffrey M. Zirger, Information Collection Review Office, Centers for Disease Control and Prevention, 1600 Clifton Road NE, MS-D74, Atlanta, Georgia 30329.
Instructions: All submissions received must include the agency name and Docket Number. CDC will post, without change, all relevant comments to Regulations.gov.

Please note:
Submit all comments through the Federal eRulemaking portal (regulations.gov) or by U.S. mail to the address listed above.

FOR FURTHER INFORMATION CONTACT:
To request more information on the proposed project or to obtain a copy of the information collection plan and instruments, contact Jeffrey M. Zirger, Information Collection Review Office, Centers for Disease Control and Prevention, 1600 Clifton Road NE, MS-D74, Atlanta, Georgia 30329; phone: 404-639-7118; Email: omb@cdc.gov.
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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.
The OMB is particularly interested in comments that will help:

1. Evaluate whether the proposed collection of information is necessary for the proper performance of the functions of the agency, including whether the information will have practical utility;

2. Evaluate the accuracy of the agency's estimate of the burden of the proposed collection of information, including the validity of the methodology and assumptions used;

3. Enhance the quality, utility, and clarity of the information to be collected; and

4. Minimize the burden of the collection of information on those who are to respond, including through the use of appropriate automated, electronic, mechanical, or other technological collection techniques or other forms of information technology, e.g., permitting electronic submissions of responses.

5. Assess information collection costs.
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Medfeb said:
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.
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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.
 
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
 
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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?"
 
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cassava7 said:
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?"
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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?
 
Andy said:
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
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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

 
Interesting find:



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

So just as a take-home message, I want to stress that we observed clinically relevant indications of a compromised cardiopulmonary response in ME/CFS. We found inefficient exercise ventilation, even when directly controlling and matching on aerobic fitness. I also want to stress that ME/CFS is not a disease of low aerobic fitness. That is a false narrative. That has been propagated by non-exercise scientists. In my opinion, it's been damaging to the ME/CFS community, and it's presented a lot of noise in the research that is really unnecessary. I can't think of a plausible biological reason why someone who is low fit would have a heterogenous and complex disease like ME/CFS. It just—it doesn't make logical sense. However, understanding how the cardiopulmonary system operates and interacts with other physiological systems I think is critical for understanding disease pathophysiology.
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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.
 
Andy said:
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.
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https://www.cdc.gov/me-cfs/pdfs/SEC-transcript-December-2021-508.pdf
Featuring a presentation titled.PNG
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