News from NIH: ME/CFS Telebriefing- April 9, 2019

Source: National Institutes of Health

Date: March 21, 2019

URL: http://list.nih.gov/cgi-bin/wa.exe?A0=NIH-MECFS_INFORMATION (log-in required)

News from NIH: ME/CFS Telebriefing- April 9, 2019
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We request your participation in a telebriefing about updates on NIH's efforts to advance research on ME/CFS. The telebriefing will be held on April 9, 2019, 2:00 pm until 3:00 pm ET. If you will be calling from the U.S., please use the following dial-in information for the telebriefing:

Dial-in: 866-844-9416

Participant passcode: 7178985

If you will be calling from another country, please see the attached chart for your country's access information. (not attached, presumably log-in required)

Thank you in advance for your participation and we look forward to an engaging, thoughtful, and productive conversation.

Regards,

The Trans-NIH ME/CFS Working Group

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(c) 2019 NIH

 

Has NIH explained why this teleconference is being held 4 days after their conference on accelerating ME research?
What is NIH going to convey during the teleconference (the conference the previous week will have updates on the clinical study)?

Clinicians and researchers who viewed/took part in the conference will be scrambling to catch up after being away from their work - so they likely won't take part in the teleconference.
Patients will be recovering from taking part (remotely or in person) - so few will be in a position to take part.
[edited this line] Caregivers will be taking care of patients, some of whom exceeded their cognitive and or physical exertion limits by taking part in the conference, etc.....

Some of the trans-NIH working group members(hosting the teleconference) are part of the conference on the 4th and 5th so it's not as though they don't know about the other event.....

 

Bump--this is happening today! Per @Denise 's post, many advocates, activists, researchers, etc may not be able to join this call, so please call in if you're not PEM-ed out yourself! It's important that we hold the NIH's feet to the fire in the wake of the conference so they finally give us a real funding plan.

 

Bump, this is in 15 minutes!

 

Jaime is live tweeting about this, her Twitter account https://twitter.com/exceedhergrasp1

 

https://twitter.com/user/status/1115691377721929729

(good thread on this)

 

https://twitter.com/user/status/1115691377105367040

Pretty sure there was a Fukda study but idk if the stats match.
Checked, they do.

https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full
@JaimeS I found your sources.

 

https://twitter.com/user/status/1115687028257988608

More at link

 

Can somebody clarify for me. Last I understood, the NIH intermural study was struggling to recruit enough participants - is that not the case now?

 

They have lots of volunteers.

Not a lot seem to qualify as having doctor's records of an infection at time of onset, having ME, and having a new enough onset. Not sure whether or not they're having an issue with being able to travel and able to take an exercise test.

Also it takes a lot of time to go through the study itself.

So it seems slow to me, but it's not that they don't have volunteers. Last I heard recruiting was still open, however.

 

Great, thanks.

 

https://www.nih.gov/research-traini...nitiatives/mecfs/cfs-advocacy-call-april-2019
https://twitter.com/user/status/1121881196810657792