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February 25th PCOCA call with CDC

Denise

Senior Member
Messages
1,095
for those who are interested:

MARK YOUR CALENDARS



Tuesday, February 25, 2014

3:00 pm -4:00 pm EST


for those who are interested:
CDC CFS Patient-centered outreach and communication activity (PCOCA) Conference Call


Call number: 1-800-369-3365

Participant Code: 1471493


Please mark your calendars for the next CDC Chronic Fatigue Syndrome (CFS) Patient-Centered Outreach and Communication Activity (PCOCA) Conference Call.


Meeting Agenda


3:00pm Welcome and Telephone Overview


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

Branch Chief, Chronic Viral Diseases Branch

Centers for Disease Control and Prevention



3:15pm “CFS and Cognitive Function”

Gudrun Lange, Ph.D.

Consultant Clinical Neuropsychologist

Pain and Fatigue Study Center

Beth Israel Medical Center, NY, NY


Professor, Department of Physical Medicine and Rehabilitation Rutgers University



3:45pm Questions from CFSPCOCACall 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.


Please note that questions for the Guest Speakers and CDC can be submitted only via email at CFSPCOCACall@cdc.gov. This mailbox cannot respond to inquires received and is in use only for the scheduled CFS PCOCA calls. If you would like to be added to the call list, please send an email to CFSPCOCACall@cdc.gov.


Contact for CFSPCOCA Conference Call:

CFSPCOCACall@cdc.gov
 

Nielk

Senior Member
Messages
6,970
Since when did CDC go back in time by calling this disease CFS? I thought all government agencies have been using ME/CFS.
 

Denise

Senior Member
Messages
1,095
Since when did CDC go back in time by calling this disease CFS? I thought all government agencies have been using ME/CFS.

I don't think all government agencies have been using ME/CFS.
These are CDC links:
http://www.cdc.gov/cfs/

http://www.cdc.gov/cfs/programs/clinical-assessment/
In the text of the second link it says "CDC has begun a multi-site clinical assessment of chronic fatigue syndrome (CFS) to characterize patients with CFS or myalgic encephalomyelitis (ME) in clinical practices of clinicians with expertise in CFS/ME."
(edit) --- and most of the CDC site does not seem to have been updated since 2012, so I don't think they recently went in and changed it from ME/CFS to CFS. (fwiw)
 
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SOC

Senior Member
Messages
7,849
I don't think all government agencies have been using ME/CFS.
These are CDC links:
http://www.cdc.gov/cfs/

http://www.cdc.gov/cfs/programs/clinical-assessment/
In the text of the second link it says "CDC has begun a multi-site clinical assessment of chronic fatigue syndrome (CFS) to characterize patients with CFS or myalgic encephalomyelitis (ME) in clinical practices of clinicians with expertise in CFS/ME."
(edit) --- and most of the CDC site does not seem to have been updated since 2012, so I don't think they recently went in and changed it from ME/CFS to CFS. (fwiw)
My cynical belief is that the CDC is going to hold onto "CFS" and eventually officially reduce it to some type of somatoform disorder and acknowledge ME (whether under that name or another) as a long-existing diagnosis. That allows them to save face by claiming that our GPs were at fault for misdiagnosing us, no fault of the CDC.

So I don't expect "CFS" to go away nor do I expect the hundreds of thousands of patients with the broad "CFS" diagnosis who do not fit the CCC or ICC to be given a new diagnosis. Face-saving and ass-covering all around. No acknowledgement of abuse. Blame shifted to some large, amorphous group so no one is accountable. :rolleyes:
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
CDC has never liked to call CFS ME, they said for a very long time they were different illness which was on their site (a way out for them if shit ever hit the fan). They will always be looking for excape routes.. hence I liked SOC's post. They probably will do something like that
 

waiting

Senior Member
Messages
463
Dr. Unger says PEM is not unique to ME/CFS.
She also said (I think) that it cannot be measured -- but we already know that it can -- the Stevens Protocol 2-day CPET measures PEM. The same test also has to date revealed this PEM-effect in ME patients only -- not in other diseases.
 
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Nielk

Senior Member
Messages
6,970
Unger said, I think, that this exacerbation after exercise is seen in some inflammatory diseases and in heart failure patients. Has the 2-da CPET test been tested in these other diseases?
 

Nielk

Senior Member
Messages
6,970
From the last half of Dr. Lange's talk, I thought she did a good job describing in detail the neurological/cognitive difficulties that we encounter. She went on o say that these can be shown on imaging tests like MRIs, functional MRIs and Spect scans. She said that our difficulties are compounded when we have to multitask like taking notes when someone is talking. She said we are better off listening and then writing down what we remember. I am very challenged that way and if i wait till the end, not much remains in my memory. I do much better with written comments because then I can keep going back and re-reading it.
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
Unger said, I think, that this exacerbation after exercise is seen in some inflammatory diseases and in heart failure patients. Has the 2-da CPET test been tested in these other diseases?
She added too, I think, PEM occurs in Lyme, HIV, & several diseases (which I couldn't write down fast enough) the difference in ME/CFS being long recovery time? This would argue for 2-day CPET it would seem & indicate duration is a differentiating feature wouldn't it?
 

SOC

Senior Member
Messages
7,849
She added too, I think, PEM occurs in Lyme, HIV, & several diseases (which I couldn't write down fast enough) the difference in ME/CFS being long recovery time? This would argue for 2-day CPET it would seem & indicate duration is a differentiating feature wouldn't it?
Do we know that she understands the difference between PEM and exercise intolerance? She mentioned symptom exacerbation, which suggests she might, but.....
 

Ember

Senior Member
Messages
2,115
I didn't manage to make a note of any further information except some info relating to the CDC's multi-site study.
What manner of incompetence allows Dr. Unger to host a talk on “CFS and Cognitive Function,” complete with an explanation of how notetaking during listening overwhelms patients, while she stubbornly refuses to record her calls?

Is she feigning acquired-brain-injury status herself when she forgets to mention that the Stevens Protocol measures exercise intolerance? Perhaps she's counting on patients' having tuned out due to cognitive overload by the time she responds to her few preselected questions.
 

waiting

Senior Member
Messages
463
Do we know that she understands the difference between PEM and exercise intolerance? She mentioned symptom exacerbation, which suggests she might, but.....
I think she said only that the self-reported *subjective* description of the fatigue experienced by patients with those diseases sounded very similar to the fatigue described by ME patients. In my opinion, this is where the *objective* 2-day CPET can settle this question of whether the fatigue is the same or not. And according to the research, it's not.