28 Nov 2017 | Telebriefing - updates on NIH attempts to advance ME/CFS research - TRANSCRIPT/RECORDING NOW AVAILABLE

[Sasha]

Edit: As of 13 December, a recording and transcript are available here.

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 November 28, 2017, 1:00 until 2:00 pm ET. [...]

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

Full info here: http://www.twitlonger.com/show/n_1sqb52r

I'm a bit baffled about what number you should phone from the UK if you're not in one of those five big cities...

 

[Andy]

I'm a bit baffled about what number you should phone from the UK if you're not in one of those five big cities...

I've emailed them.

 

[BurnA]

I've emailed them.

At a guess I would say the one closest to you.

It's just to avoid you having to pay for a longer distance phone call.

 

[Andy]

At a guess I would say the one closest to you.

It's just to avoid you having to pay for a longer distance phone call.

My assumption would be that, nowadays, calls would cost the same from anywhere within the UK. Anyway, I'll wait and see what their answer is.

 

[Dolphin]

 

[Esther12]

It would be good to know what is said, but I doubt I'll ring in from the UK.

 

[Alvin]

Can't easily attend with the timing but i hope it goes well. I would suggest Dr Davis get funding, world class scientist told Stanford is not a real institution (i forget exact wording) is beyond belief. That said in general updating best practices, weeding out pseudoscience and scams (PACE for example) is good policy and they need to focus on doctor education, a CME course would be great.
They need to set up more research teams, destigmatize their funding model against the disease and repair the harm they have done, from raiding ME/CFS money in the past to the stigmatizing name and retracting negative/contradictory statements they have made in the past.

 

[MErmaid]

Can't easily attend with the timing but i hope it goes well. I would suggest Dr Davis get funding, world class scientist told Stanford is not a real institution (i forget exact wording) is beyond belief.

I would want to see the actual original document, before speculating on it’s contents. This is social media, where anyone can say anything, and they usually do.

 

[Dolphin]

Now.

 

[MErmaid]

Derya, seemed open minded and willing to learn from patients. Also, said he was available thru social media. This seems encouraging.

 

[Tom Kindlon]

 

[Tom Kindlon]

Derya, seemed open minded and willing to learn from patients. Also, said he was available thru social media. This seems encouraging.

https://twitter.com/Derya_

 

[Tom Kindlon]

 

[Esther12]

Thanks Tom and MEmermaid.

 

[Andy]

My assumption would be that, nowadays, calls would cost the same from anywhere within the UK. Anyway, I'll wait and see what their answer is.

Not sure I'm any wiser.

We are responding to your email to the National Institutes of Health (NIH) ME/CFS Working Group concerning today’s telebriefing on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

You wrote that the toll-free numbers provided for people in the United Kingdom (U.K.) to call into the telebriefing are from five cities and asked how people from other cities in the U.K. can call toll-free on those numbers. Those are the only numbers we have available for callers in the U.K.

A recording and transcript of the call will be posted on the Trans-NIH ME/CFS Working Group website (www.nih.gov/mecfs) next week. When they are posted, anyone will be able to click on “Listen to the Audio/Read the Transcript” at https://www.nih.gov/mecfs/events.

We hope this information is helpful.

Office of Communications and Public Liaison,
National Institute of Neurological Disorders and Stroke
on behalf of the Trans-NIH ME/CFS Working Group

 

[Aroa]

If they allocated more Budget to ME/CFS , there would be more researchers interested.

What about GWI then ?

 

[Tom Kindlon]

I skyped in using main US number from Ireland:

Dial-in: 877-951-7311
Participant passcode: 8394694

 

[Alvin]

I would want to see the actual original document, before speculating on it’s contents. This is social media, where anyone can say anything, and they usually do.

I believe Janet posted it on the other place when it happened, though i don't think it was a photocopy, it was typed text.

 

[Alvin]

Thats crazy, if only 12% get funded then to double the funding would require 833% more researchers.
That is ludicrous, what are the unselected ones supposed to do, leave medicine and retrain for another field perhaps?
If every other field of research has this kind of dismal response rate then we are losing 88% of our best minds...

I assume they will cry fowl if doctors apply for funding even though they are not interested in doing ME/CFS research just to get the numbers up to help get people the money who have the skills to work on this...

My post is not directed at you Tom, its directed at the ridiculous NIH who seem to think this is a chicken and the egg problem so prefer to keep treating us like second class citizens

 

[Adrian]

Derya Unutmaz suggests it was a good event and a transcript will be posted at

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