CDC conference call, June 23rd: Jarred Younger on ME/CFS treatments

[mango]

Mark your calendars on June 23rd for a CDC conference call and Q/A session on ME/CFS treatments.

Jarred Younger will be talking about treatments for ME/CFS in a Centers for Disease Control and Prevention (CDC) conference call that is open to the public. The call will occur on Thursday, June 23rd at 3pm Eastern Time (2pm Central). The call-in number is 1-800-369-2100, and the participant code is: 7673924.

More information on the talk can be found via the CDC link at the bottom of this message. If you have questions for Dr. Younger about ME/CFS treatments, they should be sent in advance of the conference call by email to: CFSPCOCACall@cdc.gov
Questions cannot be taken live at the event via phone.

http://www.cdc.gov/cfs/meetings/cfspcoca.html

 

[Never Give Up]

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 “Current and Future Research on ME/CFS Treatments – an Update from the Field”
Jarred Younger, Ph.D.
Associate Professor, Department of Psychology
Associate Professor, Department of Anesthesiology and Perioperative Medicine
Associate Professor, Division of Clinical Immunology and Rheumatology
Director of the Neuroinflammation, Pain and Fatigue Lab at UAB
University of Alabama at Birmingham


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 inquiries 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

 

[mango]

I can't find any info about livestreaming or if an official recording will be published/archived?

Anyone planning on recording it? A friend of mine is unable to call in, and she'd be super grateful if someone could make a recording available, or a transcript

 

[Kati]

Hi @mango typically those POCOCA calls are telephone based and not officially recorded or archived. Tyere has been discussions here from patients who listened and shared the information.

For those from out of country, using skype will cost much less than a regular phone line...

 

[Sasha]

Bump for this...

 

[Kati]

Oops I missed it.

 

[Kati]

From Hillary Johnson on twitter

Hillary Johnson (@oslersweb)
2016-06-23, 12:53 PM
Jarred Younger, guest on CDC patient outreach call, on dearth of drug trials: "There should always be multiple clinical trials going on."

Hillary Johnson (@oslersweb)
2016-06-23, 12:56 PM
Younger: "Where's the problem? Ppl focusing on mechanism. But to get from mechanism to drug can take 10 yrs and we have millions sick now."

Hillary Johnson (@oslersweb)
2016-06-23, 12:58 PM
Date rape drug, GHB, prescribed for narcolepsy, posed by Younger and others as restorative sleep drug for M.E.. Take it and pass out...

 

[duncan]

"restorative sleep"??

 

[Kati]

Miriam E. Tucker (@MiriamETucker)
2016-06-23, 12:55 PM
Jarred Younger, Ph.D.: Drug testing needed for myalgic encephalomyelitis / chronic fatigue syndrome while awaiting mechanistic info. #mecfs

 

[Sing]

I missed hearing this call yesterday. Does anyone know if it will be posted?

 

[Denise]

I missed hearing this call yesterday. Does anyone know if it will be posted?

Typically it is not posted by CDC.
(And that's too bad because often patients/advocates can't join the call in real time.)

 

[Sing]

Typically it is not posted by CDC.
(And that's too bad because often patients/advocates can't join the call in real time.)

Now I am thinking that maybe Jarred Younger would post it, or else report about it. He is a big communicator with the patient world--with everyone--and does it well. I think that is one of his greatest gifts--not only trying to find intelligent modes of research, to try to bring treatment results to us as quickly and inexpensively as possible, but also to make the links with people, so that the herd of cats we have been, or been dealing with, can come together and find some answers!

@usedtobeperkytina

 

[Horizon]

He did say not to write down all the medications he was talking about because there were many. He said that list would be made available. How do we get it?