NIH: ME/CFS Telebriefing - July 19, 2018

MeSci

MeSci

Senior Member (Voting Rights)
Source: National Institutes of Health

Date: July 10, 2018

URL: http://list.nih.gov/cgi-bin/wa.exe?A0=NIH-MECFS_INFORMATION

NIH: ME/CFS Telebriefing - July 19, 2018
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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 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 remember to 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

(Don't ask me anything - that's all I received!)
 
Can everybody participate? Is it for listening only or does one have to give some input?

Oops, I asked a question. :D
 
MeSci said:
I suppose so - don't know anything about these events other than what's in the messages!
Click to expand...

It's good to have them on there. :thumbup:

You click on 'Thread tools' above your first post and it will allow you to add it to the calendar.
 
Hope this hasn't been posted anywhere else. I'm not very with-it at the moment.

Source: National Institutes of Health

Date: August 2, 2018

URL: http://list.nih.gov/cgi-bin/wa.exe?A0=NIH-MECFS_INFORMATION

News from NIH: Telebriefing audio and transcript now available
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The audio recording and transcript of the July 19th telebriefing are now available on the NIH ME/CFS website

https://www.nih.gov/research-traini...s/mecfs/nih-me/cfs-advocacy-call-july-19-2018

Regards,

The Trans-NIH ME/CFS Working Group
 
Thanks @MeSci. Well, that was underwhelming. A large part of the presentation was about developing an app so that people with ME can log their symptoms. All very nice, but the schedule includes two years just developing the specification. Yes, yes, collaboration with patients is very important to get it right, but surely, with enough focus and resources, developing a specification for a basic app need only take 6 months?

And there was talk of the app being linked to social media so that patients could interact with other patients... If they must use scarce NIH allocated funds for a new app rather than tweaking an existing symptom-logging app, surely the focus should be on making, quickly, a flexible app that simply allows for the gathering of the patient-reported data they need? If they want to go into the business of making fancy apps for patients with links to social media, just maybe they could do that after they have found the cause of the disease?

Also, it's difficult not to respond cynically when we are told that it is a lack of brain tissue that is holding things back.

I know at least some of the people on the call are indeed working hard, but the only sense of urgency came from the patients and carers who asked questions.
 
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