ME/CFS Collaborative Research Centers & Data Management Center Announcements

[neweimear]

@Janet Dafoe (Rose49) Are ye very disappointed about the RFAs. I hope there are other ways forward, that a grant proposal can be submitted again, any luck sourcing any generous philanthropists? I was gutted today but I know Dr.Davis will keep ploughing on...

 

[lilpink]

Like IiME Research and OMF and others, she has a pressing personal interest in resolving this disease asap.

https://twitter.com/i/web/status/838577234965319681

https://twitter.com/i/web/status/893881800333946880

'Up close and personal' seems to make so much difference I tend to think. I wonder if would make that difference if any members of the BPS school discovered a child of theirs suddenly developed ME, severe or otherwise?

 

[Nielk]

Jennifer Spotila posted details on her blog - http://occupyme.net/2017/09/27/finally-rfa-funding-announced/

 

[dreampop]

Oh man, how did Davis not get funded? I don't want to criticize any of the other bids, but I'd have him ahead of the 3 that got funded and whose projects overlap with each other anyway. I like the idea of JAX being involved but at almost $14 million of NIH money over 5 years and no history or published stuff, Idk, it's more 1 of the other 2 that I think could make room. But you can't put a price on inspiring the community.

 

[Jo Best]

FINALLY: RFA Funding Announced. Posted on September 27, 2017 by Jennie Spotila:
http://occupyme.net/2017/09/27/finally-rfa-funding-announced/

 

[Janet Dafoe]

I think all the 'winners' had to be leaders of collaboratives with other centres. OMF and others may be part of one of the winning bids.

No. That isn't the case.

 

[Janet Dafoe]

I hope that's the case. But you'd expect Stanford to be mentioned somewhere.

No it's not the case.

 

[Neunistiva]

I too am very disappointed that Dr. Davis didn't get funded. Especially because application process is so complicated it took the time away from research.

This is a reminder to us all that despite RFAs being an important recognition, our fight for fair funding has only just begun.

 

[necessary8]

No. That isn't the case.

This is so very sad to hear. I know Ron and his team worked so hard on this application. If it was up to us patients I'm pretty sure Ron would get all the money and distribute it however he thinks is best. He's the one who orchestrated this whole new scientific movement around ME/CFS. If not for him, I dont know if there even would be such grants from NIH at this moment. And he demonstrated amazing efficiency with his funding, doing so much with so little. Oh, I could only dream what he could do with 10 extra million. Hugs to you and Ron, Janet. This must be hard for you two, finding out that he didnt get the funding. Just remember that in our hearts, Ron's team is best team. And we will continue donating and otherwise supporting it however we can.

Now, everyone. Should we spam the NIH with emails very politely asking why was Ron's application declined, and explaining why we think it should have been accepted?

If I'm not mistaken, Naviaux and Mark Davis were also in his team. Literally all the researchers who have strong leads (aside from the Norwegians) in one team, that got declined.

I think we should insist they make it 4 centers, not 3. Make a petition or something.

What does everyone think?

 

[Snow Leopard]

Other applicants:

• Dr. Ron Davis at the Genome Technology Center at Stanford
• Dr. Nancy Klimas at the Institute for Neuroimmune Medicine
• Dr. Lenny Jason at DePaul University
• Dr. Dane Cook at the University of Wisconsin, Madison
• Dr. Vincent Lombardi at the Nevada Center for Biomedical Research
• Dr. Jose Montoya at the Stanford Chronic Fatigue Initiative
• Dr. Janet Mullington at Harvard University and Beth Israel Deaconess Medical Center

It seems to me that we need to press for another round of grants next year.

Walter J. Koroshetz recently stated that to "really get this field moving" we need "ten times the funding". This means a round of grants like this each and every year.

 

[Nickster]

No it's not the case.

I am grateful for nih funding for our disease.
But, I can't believe there is no funding for our beloved Dr Ron Davis. His knowledge, ability to bring people together as a true team and motivation to find a cure for your childs disease is greater than any others out there.
It seems that he has been stricken down. However, Dr Davis is still here and against great odds to come this far, create awareness to this disease and his tireless effort to find a cure.
I beleive he has been knocked down, but, he, Janet, Ashley and team can get back up.
What can we all do to help? Spread the word of this great scientist to our medical community and philanthropists.
Ann
@Janet Dafoe (Rose49)

 

[ivorin]

No it's not the case.

I'm so sorry about this, I am sure you will soldier on though, like we all have to and will

 

[Jesse2233]

@Janet Dafoe (Rose49) any possibility that the NIH can still fund Ron for this period through some other avenue? And if so any thoughts on how we can help pressure Collins or Koroshetz?

 

[TreePerson]

Yes really sorry to hear this @Janet Dafoe (Rose49). I am buying a lottery ticket it's all I can think of just now. And I will keep doing everything I can to encourage friends and family to donate.

 

[Janet Dafoe]

A promising connection, though. Dr. Maureen Hanson of the Cornell Collaborative joined the OMF Scientific Advisory Board directed by Dr. Ron Davis which includes Dr. Naviaux, Dr. Mark Davis, Drs. Fluge/Mella, etc....

https://www.omf.ngo/scientific-advisory-board/

Ron says: We have been talking with Maureen about our results and her results for some time. She was recently at Stanford participating in our scientific working group meeting about the molecular basis of ME/CFS with scientists throughout the world. However, only people who were part of the grant will be funded. No outside people will be funded. Maureen and my grants were separate.

 

[Janet Dafoe]

@Janet Dafoe (Rose49) any possibility that the NIH can still fund Ron for this period through some other avenue? And if so any thoughts on how we can help pressure Collins or Koroshetz?

Ron says: The only way for our team to get NIH funding is to apply for more grants. We are finishing up another one now that is due Oct 5. Unfortunately, all this grant writing takes significant time away from research, which is too bad. Continued pressure on Collins and Koroshetz is essential for more funding for this disease, because this is still woefully inadequate. You might want to let them know that you know that the problem here is not a lack of good grant applications!

 

[Jesse2233]

@Janet Dafoe (Rose49) Does Ron think a petition on https://www.change.org/start-a-petition targeted at Collins / Koroshetz would be helpful? And if so is there a funding target we might ask for?

 

[Janet Dafoe]

I wonder about this myself. Does this mean only the eastern side of the country will be studied? I'm on the west coast, so I certainly wouldn't be likely to see any of the specialists that will be getting funding.

Ron thinks it is a big mistake not to fund at least one center on the Western side of the country.

 

[ivorin]

@Janet Dafoe (Rose49) Does Ron think a petition on https://www.change.org/start-a-petition targeted at Collins / Koroshetz would be helpful? And if so is there a funding target we might ask for?

Just a thought, but has anyone tried including the Avaaz comunity into the campaigning -- they have a lot of pull these days and may want to contribute -- the petition could go through them.

 

[Janet Dafoe]

@Janet Dafoe (Rose49) do you have any comment about this?

My own comment about this is that I am extremely bummed and disappointed about this, because I strongly believe that the fastest way for Whitney (and by extension, all of you) to get better is for Ron to have all the funding he needs. And I'm really upset and mad about the stupid and uninformed reasons the reviewers used. It's ridiculous. And I'm being conservative with how I describe the reviews.They were awful. They seemed biased to me. And I'm not just saying that out of sour grapes. It was shocking to read.