NIH 5 years strategic plan webinar with dr Lipkin

[Kati]

https://www.eiseverywhere.com/ehome/index.php?eventid=135523&

Tomorrow August 13 from 4-5:30 PM EST there will be a webinar regarding the NIH 5 years plan using the Adobe connect technology.(you may need to download an app, so do it before the webinar begins)

NIH on twitter mentioned Dr Lipkin would be presenting.

There is an opportunity to ask questions. You need to register at the link mentioned above.

In order to advance its mission, NIH is developing a 5-year NIH-wide Strategic Plan to outline a vision for biomedical research that will pursue fundamental knowledge about the nature and behavior of living systems and apply that knowledge to extend healthy life and reduce illness and disability. The plan identifies crosscutting areas of research exemplifying the breadth of NIH Institutes’, Centers’, and Offices’ priorities and aims to outline a set of unifying principles to guide NIH in pursuit of its mission.

Please join these webinars to discuss the proposed strategic plan. The webinars will include a Q & A period, and we encourage you to submit questions during the event. You may also submit questions in advance by email at nihstrategicplan@od.nih.gov

Please see the Request for Information and the submission site where you may provide your comments online. (deadline: August 16, 2015)

Copies of the slide presentation (pdf) for the webinars can be downloaded and reviewed.

 

[Kati]

@Simon @alex3619 @jspotila @Mark @Ecoclimber

And I will miss people. Please tag them if you want them to see this, this is important stuff.

 

[Denise]

@Kati thank you very much for posting this info.

 

[Sasha]

Massive irony, considering how the NIH is treating Dr Lipkin's ME/CFS proposals (and Dr Ron Davis's, among others).

@aimossy, @Bob, @searcher, @viggster.

 

[Kati]

Massive irony, considering how the NIH is treating Dr Lipkin's ME/CFS proposals (and Dr Ron Davis's, among others).

@aimossy, @Bob.

Indeed. I wonder if dr Lipkin will make any mention of ME considering what he knows about the disease, considering the NIH's views of it, and the fact that his grants requests have been denied.

It's like a major chess game.

Regardless, it is important for patients with ME to be present and to engage.

 

[barbc56]

Wonderful! Thanks @Kati

I hope this will be recorded.

Barb

 

[Kati]

For those using twitter, the hashtag that NIH has used is #NIHplan.
You can also address to Dr Francis Collins using @NIHDirector.
Also add #mecfs if you are so inclined so we can keep track of the tweets.

 

[Bob]

For UK folk, I think the start time (4pm EST) is 21:00 BST and for international folk it's 20:00 GMT/UTC.

 

[Sean]

From the Adobe Connect Trial page:

If you have been invited to attend an Adobe Connect meeting, a trial of Adobe Connect is not required to attend. Simply click on the meeting URL you have been provided to join.

Can we just get a URL to view it in a browser, without having to install more Adobe crap?

 

[Bob]

Can we just get a URL to view it in a browser, without having to install more Adobe crap?

I don't know but last time I watched a presentation using the Adobe Connect system I think I had to install the software. It was easy to install.

Do we have to register to watch the presentation?

 

[Nielk]

Massive irony, considering how the NIH is treating Dr Lipkin's ME/CFS proposals (and Dr Ron Davis's, among others).

@aimossy, @Bob, @searcher, @viggster.

Keep in mind that Lipkin gets huge amounts of NIH funding for all his other works.

 

[waiting]

There are 2 key issues listed on the slides that I think present discussion opportunities for us.

1. "Advance Treatment/Cures
--breakdown of traditional disease boundaries"

-- Rituximab!!
-- what became of NIH SOK 2011 conference?

2. "Unifying Principles
Setting Priorities
-incorporate disease burden - imp but not only factor"

-- why are we not funded commensurately re: disease burden?
-- what are the "other factors" (assume they will discuss this)

 

[Seanko]

Looking forwards to an #mecfs / nihplan Twitter storm.

 

[Bob]

In case it helps anyone:

For audio you may listen via your computer speakers or by telephone.
Dial toll free: 1-877-407-9036
(Your line will be muted upon entry.)

 

[Kati]

Strategic plan starts in 15 minutes.

 

[Kati]

I think the message I got from them is very clear. If we want more funding for researching this disease at NIH, we need to ask congress to increase funding. Each and every US patient needs to write a letter to their congress representative asking to increase funding for ME.

i believe ME Action has one-click emails.

 

[beaker]

Thanks Kait. I haven't been on computer all day and missed it. Is it worth going back and reading the tweets ?
Thanks.

Yes, we do need to up letter writing campaign.

 

[Sasha]

#MEAction US petition to Congress for more NIH funding:

http://my.meaction.net/efforts/tell-congress-to-support-funding-equality-for-me-cfs/near/new

#MEAction Global Solidarity petition to Congress for people outside the US:

http://my.meaction.net/petitions/us...-around-the-world-care-about-funding-equality

 

[Sean]

Each and every US patient needs to write a letter to their congress representative asking to increase funding for ME.

This.

The US political system will not listen to non-US citizens. (Nothing wrong with that. It is US taxpayers' money, and the US has to decide where to spend it.)

The push for greater funding to the NIH for studying this disease must come from US citizens.

If individual US patients only ever do one thing for this disease at the political/activist/campaign level, this is the one they need to do.

Forget everything else for now. Put aside all differences within the patient community. Concentrate solely on getting US patients to write letters demanding more funding for this disease.

 

[Kati]

This.

The US political system will not listen to non-US citizens. (Nothing wrong with that. It is US taxpayers' money, and the US has to decide where to spend it.)

The push for greater funding to the NIH for studying this disease must come from US citizens.

If individual US patients only ever do one thing for this disease at the political/activist/campaign level, this is the one they need to do.

Forget everything else for now. Put aside all differences within the patient community. Concentrate solely on getting US patients to write letters demanding more funding for this disease.

That said, I think patients can and should be speaki g to their political representant for the country they live in. Canada for instance is not funding any money for research and they absolutely should. It is not right.