ME/CFS Collaborative Research Centers & Data Management Center Announcements

[Groggy Doggy]

@Valentijn is there an existing model for researchers to share their grant proposals with the public? I worry that a review board might see this as a conflict of interest that could bias the study later on.

@Jesse2233

This is a great question for Vicky Whittemore

mailto:whittemorevr@mail.nih.gov

301-496-1917

 

[Neunistiva]

However, patients can advocate for the OMI to be funded by another grant.

You mean OMF?

 

[AndyPR]

Links to the project info on the funded teams on the NIH site;

Lipkin/Columbia
Admin Core - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479908&icde=0
Project 1, Microbiology of ME/CFS - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479909&icde=0
Project 2, Molecular signatures for ME/CFS - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479910&icde=0
Project 3, Clinical Correlates and Diagnostics in ME/CFS - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479911&icde=0

 

[AndyPR]

Links to the project info on the funded teams on the NIH site;

Hanson/Cornell
Admin Core - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479859&icde=36166731
Clinical Core - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479860&icde=36166731
Integrative Analysis Core - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479861&icde=36166731
Project 1: OXIDATIVE STRESS AND NEUROINFLAMMATION: CO-CONSPIRATORS IN ME/CFS PATHOPHYSIOLOGY - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479862&icde=36166731
Project 2: PROBING THE PATHOPHYSIOLOGY OF ME/CFS - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479863&icde=36166731
Project 3: DECIPHERING GENE DYSREGULATION ACROSS THE IMMUNE SYSTEM IN ME/CFS WITH SINGLE-CELL TRANSCRIPTOMICS - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479864&icde=36166731

 

[Michelle]

Is it the same panel of reviewers scoring all 10 of the applications? Or does NIH send the applications to a pool of reviewers, who then score the applications and the applications with the highest scores win? Because it sounds like, as frustrating as it may be, Davis & Co. may have simply gotten massively unlucky with a particular reviewer -- something that could have happened to any of the applications but, unfortunately, just happened to Davis's? But I am so totally just guessin' on that one as the byzantine process of NIH grant reviewing and er, granting is pretty murky to me.

Concur with sentiments upthread -- esp. @AndyPR -- that the competition was so stiff here, great research IS being funded, and Ron may end up working much faster w/o NIH's cumbersome funding mechanisms.

 

[AndyPR]

Links to the project info on the funded teams on the NIH site;

Unutmaz/Jackson
Admin Core - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479803&icde=36166814
Clinical Core - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479804&icde=36166814
Clinical Research: TOPOLOGICAL MAPPING OF IMMUNE, MICROBIOTA, METABOLOMIC AND CLINICAL PHENOTYPES TO REVEAL ME/CFS DISEASE MECHANISMS - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479805&icde=36166814
Basic Research: TOPOLOGICAL MAPPING OF IMMUNE, MICROBIOTA, METABOLOMIC AND CLINICAL PHENOTYPES TO REVEAL ME/CFS DISEASE MECHANISMS - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479806&icde=36166814

 

[Hajnalka]

So why have no billionaires stepped up? I have only one explanation I can come up with ...
Lack of awareness of the incredible work that Ron Davis and the OMF are doing!!!

And I'm just talking about billionaires. The same logic should apply to people with hundreds of millions of dollars (and there are a LOT more of those people out there). Super-rich people with a vested interest in solving ME/CFS must be out there; it's just a matter of finding them. So ... how do we find them???

I like your math! But my personal explanation would rather not be the lack of awareness of the work of Ron Davis (what would be easier to fix) - but that these potential allies haven't been diagnosed yet (up to 91%). There must be philantrops/rich people out there with ME (or a loved one with ME) with no diagnosis or a misdiagnosis of depression.

I hope getting the word out about ME (e.g. with Unrest) will get more people diagnosed and thus generate more private funding - and in the end more public funding because the pressure on governments will grow with more diagnosed people who demand treatment.

 

[AndyPR]

Links to the project info on the funded teams on the NIH site;

Williams/Research Triangle Institute
Data Management and Coordinating Center - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479323&icde=36244853

 

[AndyPR]

Is there any chance that we can keep posts on this thread to conversation about the funded projects and related news? By all means discuss the failure of Ron/Stanford to win funding but for clarity on both topics please use a different thread for it.

 

[Jonathan Edwards]

@Jesse2233

The grant money has been given and cannot be taken back. The ship has sailed. I don't think a petition will serve any purpose now. However, patients can advocate for the OMI to be funded by another grant.

I agree. I think it would be more constructive to keep this thread to a positive reflection of the substantial funding that NIH has provided.

 

[Solstice]

I'm all for more money to the OMF, but the bids that did get funded look very strong in their own right so I'm thankful for that. This is a huge step up which should be celebrated with also keeping an eye on getting funding for the OMF. I don't think a petition or detracting from the people that did get funded is gonna help, in the contrary. I don't even think asking the NIH directly to fund Davis a next time is gonna work out for us. This energy could be expended better in getting the word out about the work they do and asking people to donate.

 

[adreno]

You mean OMF?

Yeah, my bad.

 

[SB_1108]

I agree. I think it would be more constructive to keep this thread to a positive reflection of the substantial funding that NIH has provided.

Omg you can't be serious!?! I'm glad the NIH is taking steps but this amount is not enough to make a difference. They need to ramp up funding substiantially before I will be sending any thank you notes. We should be receiving at least $188 million based on disease burden: http://www.meaction.net/2017/01/07/dimmock-mirin-jason-estimating-disease-burden-in-the-us/
We need to continue to advocate for more research and as a part of that, it's important to discuss concerning issues when grants are denied.

 

[BurnA]

Omg you can't be serious!?! I'm glad the NIH is taking steps but this amount is not enough to make a difference. They need to ramp up funding substiantially before I will be sending any thank you notes

It's fine to have that position but this thread isn't about NIH total funding for ME it's about the grants being awarded.

 

[SB_1108]

It's fine to have that position but this thread isn't about NIH total funding for ME it's about the grants being awarded.

And the last sentence of my post (which you omitted above) was about that exactly. Regardless, discussing individual grants in relation to the overall program budget is pretty standard.

Not trying to highjack the thread but Dr Davis' denial is a huge deal and there are multiple ideas for community advocacy that are being discussed. Sure we can start another thread about that but it seems people are brainstorming about how to move forward. I don't think we need to shut that down because it's still relevant to the thread.

 

[Sasha]

@Jesse2233

The grant money has been given and cannot be taken back. The ship has sailed. I don't think a petition will serve any purpose now. However, patients can advocate for the OMI to be funded by another grant.

Hi adreno - just for clarification, the OMI is the Open Medicine Institute, headed by Dr Andy Kogelnik. The OMF is the Open Medicine Foundation, led by Linda Tannenbaum and with Dr Ron Davis as the head of its Scientific Advisory Board. The OMF doesn't do research: it raises money for research, specifically the End ME/CFS Project.

So we should be seeking for neither the OMI nor the OMF to be funded by the NIH - rather, we should be looking for Ron Davis's group to be funded directly.

Have I got that right, @Janet Dafoe (Rose49)?

 

[adreno]

So we should be seeking for neither the OMI nor the OMF to be funded by the NIH - rather, we should be looking for Ron Davis's group to be funded directly.

Yes, I misspelled. Is there an official name for "Ron Davis' group"?

 

[Sasha]

Yes, I misspelled. Is there an official name for "Ron Davis' group"?

I think it's the Stanford Genome Technology Center. But I've belatedly seen pleas to focus this thread on the projects that were actually funded - sorry!

 

[Solstice]

Omg you can't be serious!?! I'm glad the NIH is taking steps but this amount is not enough to make a difference. They need to ramp up funding substiantially before I will be sending any thank you notes. We should be receiving at least $188 million based on disease burden: http://www.meaction.net/2017/01/07/dimmock-mirin-jason-estimating-disease-burden-in-the-us/
We need to continue to advocate for more research and as a part of that, it's important to discuss concerning issues when grants are denied.

Noone's disagreeing we should advocate for more. But these centers being funded is a huge step up from what it used to be. I'm not on twitter and don't know any direct channels of communication to them, but if I were I'd be thanking them for the funding with an addendum about this disease still needing much more. As a first step this is good, now onwards and upwards.

 

[AndyPR]

Not trying to highjack the thread but Dr Davis' denial is a huge deal and there are multiple ideas for community advocacy that are being discussed. Sure we can start another thread about that but it seems people are brainstorming about how to move forward. I don't think we need to shut that down because it's still relevant to the thread.

No, it's not relevant to this thread, which is about the funded centres. Start a new one or move over to the proposed petition thread.