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

By hyperventilation does he mean shallow breathing ( air not getting " right down"?), as opposed to say that associated with anxiety?
Not being able to breathe properly does make my daughter dizzy ( and feeling sick) - I would agree that this isn't POTS- more like a O2/ C02 ratio issue?

 

I'm not sure I recall. I do seem to recall he thought he could correct this with breathing exercises. I know of one so-called ME/CFS expert - not Natelson - who also thought breathing exercises would resolve this low-carbon tidal pool POTS-likecondition, and the person he suggested for the breathing exercises turned out to be a psych.

I am wary of this.

 

Two papers by Natelson on hypocapnia, both over a decade old:

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Does anyone have a transcript?

 

Source: National Institutes of Health

Date: May 21, 2019

URL: http://list.nih.gov/cgi-bin/wa.exe?A0=CFSAC-L

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

CDC ME/CFS Stakeholder Engagement and Communication (SEC) Webinar/Conference Call, June 3 at 3:00pm
---------------------------------------------------------

CDC's next ME/CFS Stakeholder Engagement and Communication call is scheduled for June 3, 3:00 pm EDT. No registration is required.

Dial-in information:

Call number: 1-888-790-3359

Participant Code: 4299828

For more information about this call, please visit:

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

Contact for MECFS-SEC Conference Call:

MECFSSEC@cdc.gov

(This is all the info I have)

 

Are the organizations involved in this? MEAction, SMCI, OMF? Patients can't handle this, we can't prepare or hold our own in this kind of setting. These things are happening without significant involvement from advocates who can hold the CDC accountable and it just allows deniers to control the flow of information that makes its way into government decision-making.

 

@rvallee - there isn't a lot of input on these calls other than questions that must be submitted ahead of the call.


June 3, 2019
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 “Pacing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome & Fibromyalgia”
Alison C. Bested M.D. FRCPC
Diplomate, Integrative Medicine
Associate Professor and Chair Integrative Medicine
Institute for Neuro-Immune Medicine
Dr. Kiran Patel College of Osteopathic Medicine
Nova Southeastern University, Fort Lauderdale, Florida
3:45pm Questions from MECFS SEC Call Mailbox for Guest Speaker and CDC (https://www.cdc.gov/me-cfs/programs/meetings.html)

 

Why on earth do we need more education on pacing, when the CDC could have gotten someone such as Ron Davis, Jarred Younger, or even Dr Klimas who could speak about her clinical trials?

This is absolutely frustrating from my point of view.

 

(I am not being flippant) - that'd be a good question to ask them.

ETA - (this is from their listserv email)
"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.



Contact for MECFS-SEC Conference Call:

MECFSSEC@cdc.gov "

 

Why do they feel the need to discuss pacing? This is not a talk show or "The Doctors". What a waste of time.

 

Good point. Where is that from anyway?

 

Ha. Don't know. I just see it often.

 

Doesn't look like it went well.

https://twitter.com/user/status/1135634872096174082


https://twitter.com/user/status/1135637865306763266


https://twitter.com/user/status/1135640882559033346


What's even the point of those? Where the hell is $5M per year going then? This is beyond embarrassing given the recent acknowledgements this is borderline criminal misuse of public resources and indifference to a major public health crisis.

 

The focus on pacing needs to be reserved for new patients. Presenting the same stuff (pacing, meditating, gentle exercises) over and over is insulting. Patients are not stupid. On one side you have doctors and researchers involved in research and cutting edge, and on the other side you have doctors who sell books, focuses on the social determinants of health, on acceptance and taking care of the soul. I am very disappointed that CDC is pressing for that when there is so much work that needs to be done.

I am glad I didn’t watch.

 

I'm stupid, but I did figure out, eventually, that running head first into a wall was not helping and that the current advice to do so was probably motivated by either malice or people who didn't understand what a wall was.