CDC PCOCA conference call Sept. 9

[Nielk]

Tuesday, September 9, 2014

3:00 pm - 4:00 pm EDT



CDC CFS Patient-centered outreach and communication activity (PCOCA) Conference Call



Call number: 1-800-857-5128

Participant Code: 4459244



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 "Can ME/CFS and FM Sleep Research Help You Sleep?"

Lucinda Bateman MD

Director, Fatigue Consultation Clinic

Adjunct Assistant Professor, Anesthesiology - Operations, University of Utah

Adjunct Instructor, Family and Preventive Medicine, University of Utah



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

 

[Gingergrrl]

Just want to clarify, does this mean anyone can join the conference call to listen to the speakers by calling that number w/the code? Also is it 3pm west or east coast time?

 

[Nielk]

Just want to clarify, does this mean anyone can join the conference call to listen to the speakers by calling that number w/the code? Also is it 3pm west or east coast time?

Anyone can call in at the above number. The time is Eastern Standard Time.

 

[Nielk]

It is due to start in 10 minutes for those who want to call in.

 

[Nielk]

Update from Dr. Unger of the CDC at 3:05pm

Call number: 1-800-857-5128
Participant Code: 4459244

 

[Nielk]

I tried to listen in but, just gave up because of my headache and the sound was too much to take.

I hear Dr. Unger's brief cap about the CDC mulltisite study. She did say that the IOM was very interested in the study and the CDC gave them their latest assessment on some topics such as PEM, sleep and neurocognitive problems which will be publicly available once the IOM completes their work.

I don't think there was anything new there. She talked about the second phase which includes a follow up of the patients from 1st phase compare to controls which suffer from similar diseases and healthy controls. They are collected am saliva for cortisol. blood for RNA, DNA and NK cell number and function. They are looking at pediatric patients as well as some home bound patients.

Dr. Bateman is talking about sleep problems in MECFS and Fibromyalgia. She started to talk about how to measure the problem which can be done with a polysomnogram (sleep study).

MECFS patients have shown to have increased alpha waves, decreased delta waves (deep sleep), fragmented and delayed sleep onset.

That's all I got.

 

[Nielk]

By the way, I was somewhat disturbed to hear that the IOM panel is receiving information from the CDC's Dr. Unger for PEM in patients being that I don't think that Dr. Unger believes that this has been shown/proven with the two day PET test.

 

[GalaxiiGrl]

I find it a little hard to believe that there were NO questions submitted by the "audience" directed towards the CDC.

 

[catly]

I hope someone taped Dr. Bateman's part, when she started talking about over reaction to stimuli in the brain--the conference line was all static and breaking up, then it started buzzing--talk about over sensory stimulation! I wouldn't be surprised if many PWME had to disconnect.

For those of you who missed it, I don't think she added anything to what we already know about sleep, or lack thereof.

 

[Nielk]

I find it a little hard to believe that there were NO questions submitted by the "audience" directed towards the CDC.

I did not wait till the end. I'm sure there were questions.

 

[Kati]

I missed it. I knew I was forgetting something... Ah well...

 

[GalaxiiGrl]

I did not wait till the end. I'm sure there were questions.

After Lucinda Bateman's talk, the moderator said something to the effect of, since there weren't any questions submitted for the CDC to answer, they'd jump directly to the questions for Dr. Bateman about sleep problems with ME/CFS. Then they lobbed her a few softball questions.

 

[Nielk]

After Lucinda Bateman's talk, the moderator said something to the effect of, since there weren't any questions submitted for the CDC to answer, they'd jump directly to the questions for Dr. Bateman about sleep problems with ME/CFS. Then they lobbed her a few softball questions.

Why am I not surprised?

 

[NK17]

Thank you ladies for pitching in and trying hard to listen and follow.
Even if I wanted to and had the necessary stamina, from what you say, nothing new under the sun ...

 

[catly]

Definately didn't miss much. Bateman's presenation will be up on the OFFER website eventually but they said that Beth Unger's presentation will not be recorded or reprinted. I tried to tape it on my I-phone but it didn't work. Besides the audio was so bad I don't think I could relisten to it again.

Unger stated that the CDC had a lot of positive feedback on their educational programs for providers. Guess she missed my point by point constructively critical commentary when I did the module as an RN.

I urge any of you with medical background to take the online course on the CDC website and provide feedback. I don't think it's helping the medical community understand the seriousness of this illness.

 

[WillowJ]

I find it a little hard to believe that there were NO questions submitted by the "audience" directed towards the CDC.

It is a little hard to have questions when the way they are taken is by email ahead of time, and her topic is vaguely announced as "CDC update".