NIH ME/CFS Telebriefing July 19, 2018

[Gemini]

NIH ME/CFS Telebriefing Announcement:

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 July 19, 2018, 4:00 until 5:00 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: 4042892

If you will be calling from another country, please see the attached chart for your country’s access information.

Please register at NIHME-CFSWorkingG@ninds.nih.gov if you plan to participate in the call.

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

 

[Gemini]

NIH ME/CFS Telebriefing Announcement

Edit: Title was originally incorrectly posted as July 18th. Telebriefing is Thursday July 19th.

 

[Moof]

Excellent – look forward to hearing more about it.

 

[Sing]

Do you have to register in order to be able to listen, or is registering only necessary if you want to talk?

 

[Gemini]

If you will be calling from another country, please see the attached chart for your country’s access information.

International Toll-Free Call-in Numbers:

UK 0808-238-9816
Canada 866-845-8493
Ireland 1800-936-202
France 080-510-2764
Germany 0800-800-1420
Spain 800-300-906
Italy 800-977-454
Norway 800-10580
Australia 1-800-027-350
New Zealand 0800-456-285
Belgium 0800-3-8929

Passcode: 4042892

This is a partial list of countries. Not on the list? Reply and I'll try to look your country up for you.

I've asked NIH to put the entire country list up on their ME/CFS Events web page, but don't see it there yet.

https://www.nih.gov/mecfs/events

 

[Gemini]

Do you have to register in order to be able to listen, or is registering only necessary if you want to talk?

Good question @Sing. I don't know.

On the last NIH Advocacy Call March 7, 2018 questions from listeners were taken after Dr. Lipkin's talk.

It would be helpful if NIH would post an Agenda for their Telebriefings so we know ahead of time who the speakers and topics are and can plan questions accordingly.

That said have not seen an Agenda for this call.

 

[Sing]

Thanks @Gemini

 

[Gemini]

Bump. Telebriefing is tomorrow.

 

[Tom Kindlon]

https://twitter.com/i/web/status/1020037037024530432

 

[Tom Kindlon]

https://twitter.com/i/web/status/1020039192783523840

 

[Dakota15]

Thanks @Gemini - on it now!

 

[Tom Kindlon]

https://twitter.com/i/web/status/1020054672126685185

 

[Sing]

The trouble is that only the immediate cause of death is probably noted, such as heart failure, suicide, etc. They don’t say “ME/CFS” since our illness is already a ghost illness.

The NIH Neuro dept needs our brains to autopsy—-makes sense!

 

[Sing]

Dr. Komaroff said they (collectively) want to do more research on our lab values after an exercise or orthostatic challenge to look for abnormalities and to compare these values with those measured in previous research when our bodies are at rest.