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?
 
By hyperventilation does he mean shallow breathing ( air not getting " right down"?), as opposed to say that associated with anxiety?
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:

https://dynamic-med.biomedcentral.com/articles/10.1186/1476-5918-6-2

Dyn Med. 2007 Jan 30;6:2.
Hypocapnia is a biological marker for orthostatic intolerance in some patients with chronic fatigue syndrome.
Natelson BH1, Intriligator R, Cherniack NS, Chandler HK, Stewart JM.
Author information

Abstract
CONTEXT:
Patients with chronic fatigue syndrome and those with orthostatic intolerance share many symptoms, yet questions exist as to whether CFS patients have physiological evidence of orthostatic intolerance.

OBJECTIVE:
To determine if some CFS patients have increased rates of orthostatic hypotension, hypertension, tachycardia, or hypocapnia relative to age-matched controls.

DESIGN:
Assess blood pressure, heart rate, respiratory rate, end tidal CO2 and visual analog scales for orthostatic symptoms when supine and when standing for 8 minutes without moving legs.

SETTING:
Referral practice and research center.

PARTICIPANTS:
60 women and 15 men with CFS and 36 women and 4 men serving as age matched controls with analyses confined to 62 patients and 35 controls showing either normal orthostatic testing or a physiological abnormal test.

MAIN OUTCOME MEASURES:
Orthostatic tachycardia; orthostatic hypotension; orthostatic hypertension; orthostatic hypocapnia or combinations thereof.

RESULTS:
CFS patients had higher rates of abnormal tests than controls (53% vs 20%, p < .002), but rates of orthostatic tachycardia, orthostatic hypotension, and orthostatic hypertension did not differ significantly between patients and controls (11.3% vs 5.7%, 6.5% vs 2.9%, 19.4% vs 11.4%, respectively). In contrast, rates of orthostatic hypocapnia were significantly higher in CFS than in controls (20.6% vs 2.9%, p < .02). This CFS group reported significantly more feelings of illness and shortness of breath than either controls or CFS patients with normal physiological tests.

CONCLUSION:
A substantial number of CFS patients have orthostatic intolerance in the form of orthostatic hypocapnia. This allows subgrouping of patients with CFS and thus reduces patient pool heterogeneity engendered by use of a clinical case definition.

PMID:
17263876
PMCID:
PMC1796865
DOI:
10.1186/1476-5918-6-2


---
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4511478/

Am J Physiol Heart Circ Physiol. 2006 Aug;291(2):H904-13. Epub 2006 Mar 24.
Postural hypocapnic hyperventilation is associated with enhanced peripheral vasoconstriction in postural tachycardia syndrome with normal supine blood flow.
Stewart JM1, Medow MS, Cherniack NS, Natelson BH.
Author information

Abstract
Previous investigations have demonstrated a subset of postural tachycardia syndrome (POTS) patients characterized by normal peripheral resistance and blood volume while supine but thoracic hypovolemia and splanchnic blood pooling while upright secondary to splanchnic hyperemia. Such "normal-flow" POTS patients often demonstrate hypocapnia during orthostatic stress. We studied 20 POTS patients (14-23 yr of age) and compared them with 10 comparably aged healthy volunteers. We measured changes in heart rate, blood pressure, heart rate and blood pressure variability, arm and leg strain-gauge occlusion plethysmography, respiratory impedance plethysmography calibrated against pneumotachography, end-tidal partial pressure of carbon dioxide (Pet(CO2)), and impedance plethysmographic indexes of blood volume and blood flow within the thoracic, splanchnic, pelvic (upper leg), and lower leg regional circulations while supine and during upright tilt to 70 degrees. Ten POTS patients demonstrated significant hyperventilation and hypocapnia (POTS(HC)) while 10 were normocapnic with minimal increase in postural ventilation, comparable to control. While relative splanchnic hypervolemia and hyperemia occurred in both POTS groups compared with controls, marked enhancement in peripheral vasoconstriction occurred only in POTS(HC) and was related to thoracic blood flow. Variability indexes suggested enhanced sympathetic activation in POTS(HC) compared with other subjects. The data suggest enhanced cardiac and peripheral sympathetic excitation in POTS(HC).

PMID:
16565300
PMCID:
PMC4511478
DOI:
10.1152/ajpheart.01359.2005
[Indexed for MEDLINE]
Free PMC Article
 
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)
 
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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.
 
If the only input is presubmitted questions what’s the point of using this “meeting” format it might as well or more accessibly for people with ME be done as blog from Unger and guest blogs.

(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 "
 
(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 "
I’m not in US though so probably best for someone from there to pick up
 
Why do they feel the need to discuss pacing? This is not a talk show or "The Doctors". What a waste of time.

90f.png
 
Doesn't look like it went well.







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.
 
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