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NIH reveals its strategic plan for 2016-2020

Countrygirl

Senior Member
Messages
5,429
Location
UK
http://www.nih.gov/news-events/news-releases/nih-unveils-fy2016-2020-strategic-plan

The National Institutes of Health (NIH) today released the NIH-Wide Strategic Plan, Fiscal Years 2016–2020: Turning Discovery Into Health, which will ensure the agency remains well positioned to capitalize on new opportunities for scientific exploration and address new challenges for human health. Developed after hearing from hundreds of stakeholders and scientific advisers, and in collaboration with leadership and staff of NIH’s Institutes, Centers, and Offices (ICOs), the plan is designed to complement the ICOs’ individual strategic plans that are aligned with their congressionally mandated missions.

“Scientific and technological breakthroughs that have arisen from NIH-supported research account for many of the gains that the United States has seen in health and longevity,” said NIH Director Francis S. Collins, M.D., Ph.D. “But much remains to be done. This strategic plan will guide our efforts to turn scientific discoveries into better health, while upholding our responsibility to be wise stewards of the resources provided by the American people.”

The plan focuses on four essential, interdependent objectives that will help guide NIH’s priorities over the next five years as it pursues its mission of seeking fundamental knowledge about the nature and behavior of living systems and applying that knowledge to enhance health, lengthen life, and reduce illness and disability. The objectives are to:

No mention of ME or CFS in the list of objectives, but, oh joy, we are promised this:
    • NIH-supported research will develop effective, tailored behavioral and social interventions to promote health and prevent illness in populations that experience health disparities.
Where is the alleged promise to help those with ME?
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Ha! Says it all really!

NIH policy: No need for me to add the script. The photo says it all.

see_no_evil_hear_no_evil_speak_no_evil___three_monkeys_photo-1024x768.jpg
 

Old Bones

Senior Member
Messages
808
@worldbackwards - I'm adding some theme music to spice it up:

Absolutely love it! Playing the piano is one of the many activities I've lost post-ME. Thanks to your video link, I now know a way, minus the arm in the air (too hard on my muscles, and bad for my POTS) that I can resume this hobby. I think I'll go and dust off my piano right now. In no time, I'll be a virtuoso. Heck, perhaps I'll even put on my old formal wear, unused after decades of no parties. What a wonderful way to start the new year!
 

Aurator

Senior Member
Messages
625
"A pivotal efficacy trial of a novel HIV vaccine, expected to begin in the Republic of South African in 2016, will confer at least 50% protection against the acquisition of HIV."
Can someone tell me just what the deal is? An illness that gets billions already gets further explicit commitment to special consideration. Does this Strategic Plan reflect what Brian Vastag asked for on behalf of all of us and what Francis Collins obscurely promised?

Or is Collins keeping quiet about where the real money is going to go? Yeah, right.
 

worldbackwards

Senior Member
Messages
2,051
I suspect one of two things: either Collins was in earnest but he can't get the wheels moving, or it was all a lot of bluster to get rid of some unwanted attention until it died down. Either way it doesn't look good.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Absolutely love it! Playing the piano is one of the many activities I've lost post-ME. Thanks to your video link, I now know a way, minus the arm in the air (too hard on my muscles, and bad for my POTS) that I can resume this hobby. I think I'll go and dust off my piano right now. In no time, I'll be a virtuoso. Heck, perhaps I'll even put on my old formal wear, unused after decades of no parties. What a wonderful way to start the new year!

Glad you enjoyed it, OB. I feel for you. I'm lucky in still being able to play for short periods, on good days, and only very slow pieces (which is just as well, given how badly I played the fast ones!). But I know how much it means and I do hope one day you're able to play again.
 

Old Bones

Senior Member
Messages
808
I'm lucky in still being able to play for short periods, on good days, and only very slow pieces (which is just as well, given how badly I played the fast ones!).

@sarah darwins I know what you mean, only being to play very slow pieces. I rarely touch my piano these days, and when I do, playing often feels like an aerobic exercise after as little as two minutes. But, my biggest problems are cognitive. At my worst, not only was I unable to read music, I couldn't recall the little rhymes children learn to help them remember the notes. The keyboard looked unrecognizable, with some of the octaves missing. And, the keys looked and felt like they were depressing themselves. Fortunately, these extreme challenges/distortions are gone. But, I can't learn or retain any of what I practice. So, despite it being 50 years since I started lessons as a child, there's not a single piece I can play. For me and the piano, "practise makes stupid" -- the more I try, the worse I get.
 
Messages
2,087
My job before I became sick involved reviewing government-wide strategic plans so I just wanted to say that they are often vague and lack certain specific details. The absence of ME/CFS, although disappointing, does not mean complete neglect.
Would be interesting to have @leokitten 's view on this
 

SB_1108

Senior Member
Messages
315
NIH consists of 27 Institutes and Centers (ICs), along with Program Offices, which collectively are referred to as ICOs. These ICOs have individual strategic plans and specific research agendas...

Since ME/CFS will soon be (or has already been???) moved to the National Institute of Neurological Disorders and Stroke, their strategic plan would offer further details (however again... it would all be very generic). Agencies typically issue a new strategic plan every four years however from the NINDS website, it appears they haven't issued a new strategic plan since 2010: http://www.ninds.nih.gov/about_ninds/plans/Strategic_Plan_2010.pdf

Even if NINDS issued a new plan this year, it is probably too soon to assume that they would include ME/CFS.
 

Denise

Senior Member
Messages
1,095
Since ME/CFS will soon be (or has already been???) moved to the National Institute of Neurological Disorders and Stroke, their strategic plan would offer further details (however again... it would all be very generic). Agencies typically issue a new strategic plan every four years however from the NINDS website, it appears they haven't issued a new strategic plan since 2010: http://www.ninds.nih.gov/about_ninds/plans/Strategic_Plan_2010.pdf

Even if NINDS issued a new plan this year, it is probably too soon to assume that they would include ME/CFS.


The ME/cfs Trans-NIH Working Group is still in charge of us - we do not have an institute home in NINDS or any other institute. Because we have no institute home, we fall under no one's strategic plan.

NINDS is currently chairing the ME/cfs Trans-NIH Working Group but my understanding is that the job of chairing the Working Group will rotate periodically.
 

SB_1108

Senior Member
Messages
315
Thanks @Denise - I still get confused about that entire situation. I just had to Google it again. This is what the Office of Research on Women's Health's website currently says about it:

How does NIH coordinate the research on ME/CFS?
At NIH, the research and activities related to ME/CFS are coordinated through the Trans-NIH Mylagic Encephalomyelits/Chronic Fatigue Syndrome Research Working Group. The National Institute of Neurological Disorders and Stroke (NINDS) serves as the lead for this Trans-NIH working group.

What is the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Research Working Group?
The Trans-NIH ME/CFS Working Group is a group of individuals from the various NIH Institutes, Centers and Offices (ICOs) who are interested in facilitating and promoting ME/CFS research at NIH. Serving on a trans-NIH group, they act as conduits between the WG and their own ICO leadership with regard to information on ME/CFS. The WG also communicates relevant activities and research on ME/CFS directly to the NIH leadership. Working together, the WG identifies cross-cutting areas of research and confronts challenges faced by multiple ICOs working on ME/CFS. The WG does not have a budget and does not have authority to fund research projects directly.

So you are exactly right @Denise - we would likely fall under no one's strategic plan. That is unfortunate but the plans are so vague and primarily for bureaucratic documentation purposes - it doesn't necessarily mean that we've been completely forgotten. But at the same time, maybe we should be advocating that ME/CFS be included on someone's strategic plan?