The Future is Almost Here: NIH Proposal To Move ME/CFS Research Forward Unveiled on the 26th

Cort

Founder of Health Rising and Phoenix Rising
Staff member

The future is almost here. After Francis Collins said "watch us move", the NIH moved forward rapidly to create their Clinical Center study. That study suggested that they were indeed making a serious commitment to ME/CFS but it's only one study. If the proposal they're about to present for funding ME/CFS reflects the commitment they showed in producing that study we'll be in very good shape.

[fright]
future.jpg
[/fright]This is a tougher gig, though. The NIH was apparently able to use funding they already had to get the Clinical Center study underway. Now they're going to ask for specific funding for ME/CFS, and they'll be going before a Council to do that.

NIH funding has been mostly stagnant or declining for quite some time. In fact, the NIH has been saying that its real buying power has declined by about a third, if I remember correctly, in the last ten years or so.

The good news is that for the first time in years, the NIH got a significant bounce in funding (+$2 billion). This is not just more money; it's mostly unallocated money, which means it presents our best chance in decades to build a research base at the NIH that grows and grows.

The Trans-NIH Working Group - a group of Institute representatives working on ME/CFS - will present their proposal to move chronic fatigue research forward during an open session of National Advisory Neurological Disorders and Stroke Council. You can watch it LIVE on May 26th at 2pm (I assume that's EST). (It will be archived as well.)

It will be the first time we can see the Working Group in action.

I don't know if this is the be all and end all of the Working Group's proposal. I believe they will have to go to different Institutes to get funding but we may get an overview of the full proposal.

I predict RFA's will be in there. I'm hoping for clinical trials for Rituximab and Ampligen (those have been rumored). I would very pleasantly shocked if a couple of Centers of Excellence showed up. We'll see! Vicky Whittemore, our champion at NINDS, has said she thinks we will be pleased.

After they give their proposal I believe the NINDS Council will determine whether to fund it. Let's hope the proposal goes well and lays the groundwork for a new era in ME/CFS research and treatment.

2:00 p.m.

VIII. Concept Clearance for Proposed Initiative


ME/CFS Research Consortium.........................................................Dr. Vicky Whittemore / Program Director / Channels, Synapses & Circuits Cluster, NINDS

To: "Emr, Marian (NIH/NINDS) [E]" <emrm@ninds.nih.gov>
Sent: Wednesday, May 18, 2016 10:52 AM
Subject: NINDS Council Meeting - May 26, 2016


As you know, the Trans-NIH ME/CFS Working Group is considering several initiatives to advance research on ME/CFS. In order to move forward, funding initiatives require approval by an Institute’s advisory council, which reviews grant applications and advises leadership on activities and policies affecting scientific programs.

On May 26, 2016 at 2:00 P.M., the Working Group’s proposal for ME/CFS will be presented during the open session of the National Advisory Neurological Disorders and Stroke Council. A copy of the Council meeting agenda is attached.

To watch the meeting live, please visit https://videocast.nih.gov on the day of the meeting. The recording will also be archived and available for future viewing.

Let me know if you have any questions.
Regards,
Marian
Marian Emr
Director, Office of Communications and Public Liaison/NINDS
31 Center Drive MSC 2540
Building 31, Room 8A07
Bethesda, MD 20892-2540
Phone: (301) 496-5924
Fax: (301) 402-2186
me20t@nih.gov
 
Last edited:

Laurie P

Member
Cort,

Thank you for posting about this meeting and giving us the link.

Could you create a calendar on Health Rising with just dates, times and links for what's going on? (Maybe if you wanted, you could add an additional link or 2 to the most pertinent blogs/forum discussions for more information. If there are more than 1 or 2 additional links, maybe there could be a link to a page of those links that spill over from the calendar.) This calendar would make it much easier to know what is going on at a glance and would help people who can't do a lot of reading and comprehending, or even just looking around. After an event, you could also post the YouTube link and transcript; if/when these exist, on the calendar for people who missed the event or who want to see it again. I've been saying "you", but if you set it up, others that are posting could all add to it and keep it going. Is there some way to do this? We need "slow lanes" on the ME/CFS websites for more severe patients and it would help to have all of these links in one place for easy reference.

I'd also like to make another suggestion. In the interest of "slow lanes" and objective reporting in our community, it would be really helpful to have a box in your articles with just links and a brief summation of key information/facts. By key information and facts, I mean information that is so objective that everyone in the community would agree on it in that moment in time. Image you have an inner Jeanette or inner Hilary…. What would you all agree is a fact that could be supported with a link to that source of information? Speaking of sources of information, I'd find it helpful if you'd tell us where your information came from. I talked with so and so for x amount of minutes on the phone or through email contact so and so said "........".

Personally, having to pull key information and facts out of all of the blogs and threads that are created and out of other people's thinking processes/psyches is too much for me. I'd like to just get the essential information and use my energy to think about it myself. Later, if I have more energy, I can consider engaging with the community about it.

Thank you for your hard work and consideration.
 
E

EYAKLLE

Guest
Years go by and by and by.
Talk n talk n talk n talking.
So sad to see all these people suffering with all these fatigue related diseases.
I really hope they can realize what they have and get steered in the right direction.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort,

Thank you for posting about this meeting and giving us the link.

Could you create a calendar on Health Rising with just dates, times and links for what's going on? (Maybe if you wanted, you could add an additional link or 2 to the most pertinent blogs/forum discussions for more information. If there are more than 1 or 2 additional links, maybe there could be a link to a page of those links that spill over from the calendar.) This calendar would make it much easier to know what is going on at a glance and would help people who can't do a lot of reading and comprehending, or even just looking around. After an event, you could also post the YouTube link and transcript; if/when these exist, on the calendar for people who missed the event or who want to see it again. I've been saying "you", but if you set it up, others that are posting could all add to it and keep it going. Is there some way to do this? We need "slow lanes" on the ME/CFS websites for more severe patients and it would help to have all of these links in one place for easy reference.

I'd also like to make another suggestion. In the interest of "slow lanes" and objective reporting in our community, it would be really helpful to have a box in your articles with just links and a brief summation of key information/facts. By key information and facts, I mean information that is so objective that everyone in the community would agree on it in that moment in time. Image you have an inner Jeanette or inner Hilary…. What would you all agree is a fact that could be supported with a link to that source of information? Speaking of sources of information, I'd find it helpful if you'd tell us where your information came from. I talked with so and so for x amount of minutes on the phone or through email contact so and so said "........".

Personally, having to pull key information and facts out of all of the blogs and threads that are created and out of other people's thinking processes/psyches is too much for me. I'd like to just get the essential information and use my energy to think about it myself. Later, if I have more energy, I can consider engaging with the community about it.

Thank you for your hard work and consideration.
Thanks Laurie.

  • We can definitely have a calendar
  • I've thought about a key facts box in the blogs for years. I will put that on the list. It wouldn't be information that everyone can agree on though; I don't know what everyone would agree on but it would list the key findings in the blog and make them easier to absorb.
  • I usually link to other sources; when I do speak to someone or communicate via email I usually mention that; I certainly mean to - I will be more careful about that in the future though to ensure it happens
Thanks for the ideas.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
They're running a little late. ME/CFS is next

2:00 p.m.

VIII. Concept Clearance for Proposed Initiative

ME/CFS Research Consortium.........................................................Dr. Vicky Whittemore, Program Director: Channels, Synapses & Circuits Cluster, NINDS
 

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