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

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 said:
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?
Click to expand...
@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.
 
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.
 
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.
 
Last edited:
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've just listened. I found it interesting. A transcript will be made available later.
Dr Natelson talked about his 2 current research projects.
1. Cerebrospinal fluid - investigating whether there are any differences between people with ME, FM and healthy controls. They will measure every protein in the CSF. The patients are all selected as not on any medication that could effect the CSF. They have the samples collected ready to be tested.
2. Sleep study - again ME and FM comparison. Patients will come into their centre and be connected to instruments and asked to nap. Not a full overnight study.

Then he talked about orthostatic intolerance.

POTS - postural orthostatic tachycardia syndrome - related to blood going to legs when standing, so heart rate increases to compensate, caused in ME by low blood volume and by spending too much time lying down. He recommends raising the head of the bed, and trying to sit as much as possible. And compression tights to prevent so much blood pooling in the legs.

POSH - postural orthostatic syndrome with hyperventilation - caused by breathing too fast or too deeply. Leads to low carbon dioxide in blood that leads to feeling faint. I lost concentration here - can't remember what else he said about it.

That's all I can remember.
 
I doubt the whole hyperventilation low CO2 variation of POTS. The hyperventilation thingee feels dangerously wrong, ie, going in the wrong direction.
 
You must log in or register to reply here.
Back
Top Bottom