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

Thank you, @Webdog!

 

https://twitter.com/user/status/994666153573208064

 

I assume that a recording and transcript of today's Stakeholder Conference Call will eventually be available on the same webpage as past conference calls:

https://www.cdc.gov/me-cfs/programs/meetings.html

 

In her CDC Stakeholder talk "ME/CFS: The Invisible Disease and its Educational Implications for Young People”, Faith Newton, Ed.D. mentioned that 88% of children with ME/CFS eventually recovered (if I remember correctly).

Does anyone know where she got the 88% of children recover figure?

 

@Webdog - I suppose it's partly a question of one's definition of recovery....
The only 3 references listed in her slides were the pediatric primer, Nijhof et al - http://pediatrics.aappublications.org/content/early/2011/04/18/peds.2010-1147, and Crawley on school absence.
But she mentioned things that showed up in Bell's (et al) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3940158/
I will be interested to read the transcript when it comes out (like you, I am hoping it will, and hoping it will be posted) as there were some other things I don't think I clearly understood.

 

https://twitter.com/user/status/1019745071628013568

 

Does anyone know where I can get a hold of the old CDC toolkit? I’m wanting to show the shift in thinking at the CDC. Whilst the new recommendations are far from perfect, they’re streets ahead of what we used to have. I’m hoping someone will have stashed a copy somewhere.

 

https://web.archive.org/web/20140511123340/http://www.cdc.gov/cfs/toolkit

https://web.archive.org/web/20140611091220/http://www.cdc.gov/cfs/pdf/cfs-toolkit.pdf

 

Thank you!

 

MARK YOUR CALENDARS


March 11, 2019

3:00 pm - 4:00 pm Eastern Time





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

participants please call in using the following information:

Call number: 1-888-603-8916

Participant Code: 7907006

Meeting Agenda


3:00pm Welcome and SEC Call Overview



3:05pm Updates from CDC – Elizabeth Unger, PhD, MD

Branch Chief, Chronic Viral Diseases Branch

Centers for Disease Control and Prevention



3:15pm “Orthostatic Intolerance: Research and Clinical Insights”

Benjamin H. Natelson, MD
Director, Pain & Fatigue Study Center, Mount Sinai Beth Israel, New York, New York

Professor of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York


3:45pm Questions from MECFS SEC Call Mailbox 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.
-----------------------------------------------------------------------------------





Meeting AgendaMECFSSEC@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.

 

Meeting Agenda



3:00pm Welcome and SEC Call Overview



3:05pm Updates from CDC – Elizabeth Unger, PhD, MD

Branch Chief, Chronic Viral Diseases Branch

Centers for Disease Control and Prevention



3:15pm “Orthostatic Intolerance: Research and Clinical Insights”

Benjamin H. Natelson, MD
Director, Pain & Fatigue Study Center, Mount Sinai Beth Israel, New York, New York

Professor of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York

3:45pm Questions from MECFS SEC Call Mailbox for Guest Speaker and CDC



Please note that questions for the Guest Speakers and CDC can be submitted only via email at MECFSSEC@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.

 

Thanks Denise. I copied and pasted but apparently the agenda part didn't copy over.
I just revised it to now include it!

 

I'm currently very foggy, so apologies if this is superfluous, but I just received an email which added:

For more information about this call, please visit:

https://www.cdc.gov/me-cfs/programs/meetings.html

 

I just got the e-mail for this.
Will try to attend.

 

Bump. Starts 30 minutes from this post.

 

Will Natelson prescribe breathing exercises for OI, I wonder?

 

He mentioned very briefly that ME and FM are different diseases (those with ME that also have pain).
He has a paper pending in that regard, abstract published but not text yet.

 

I doubt the whole hyperventilation low CO2 variation of POTS. The hyperventilation thingee feels dangerously wrong, ie, going in the wrong direction.