ME/CFS Collaborative Research Centers & Data Management Center Announcements

[Jo Best]

But I am nonetheless elated this level of funding is being invested in good ME/CFS research at all, which sends an important message to the world.

That reminded me a comment by Leonard Jason (reported to be one the ten applicants in this round of NIH grants).

"Invest in ME has been able to increase awareness and disseminate knowledge to scientists, clinicians, and patients within the ME community. With limited resources, but unlimited creativity and imagination, these patients and their supporters have showed the world what can be done. They are an inspiration for the world."

From this article by Dr. Leonard A. Jason and Zachary A. Siegel: http://www.investinme.eu/IIMEC11-news-0902.shtml

IiME's comments on the news - http://www.investinme.org/IIMER-Statement-1709-02.shtml

 

[greeneagledown]

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.

I believe that is correct. Grants responsive to a particular solicitation from NIH do not get reviewed by the exact same reviewers. Ideally they would, since that would be the fairest way to do it -- imagine going to school and having different teachers grade tests in the same class -- but I guess it's probably not logistically feasible due to individual reviewers' availability and time constraints.

If the winning researchers had gotten the reviewers that Ron got, they probably would have scored poorly, too.

 

[greeneagledown]

I think it is possible to believe all of the below:
- All 3 projects that got funded look awesome (I'm particularly pleased with the focus on immunology and metabolomics);
- There is not some sort of conspiracy at NIH against Ron Davis or OMF;
- This is a big step forward for NIH, for which they should be lauded;
- Ron probably should have gotten funding and it's disappointing that he didn't; and
- The review process at NIH is far from ideal and deserves to be criticized when it's silly.

 

[Wonko]

I would agree but I have no idea what the review process actually is at NiH, and TBH even if I did.......

 

[ukxmrv]

I think it is possible to believe all of the below:
- All 3 projects that got funded look awesome (I'm particularly pleased with the focus on immunology and metabolomics);
- There is not some sort of conspiracy at NIH against Ron Davis or OMF;
- This is a big step forward for NIH, for which they should be lauded;
- Ron probably should have gotten funding and it's disappointing that he didn't; and
- The review process at NIH is far from ideal and deserves to be criticized when it's silly.

and maybe something along the line of ?

- and for research that would be in the best possible position of finding a cure or treatment

 

[Nielk]

I am happy that the NIH has finally trickled a dime for ME, but to be honest - this is just a crumb! The need is so much greater. This disease has been so neglected at NIH for decades that it seems like a landfall that we got anything.

Just as a comparison, Autism has had an initiative that started in 2007, setting up centers of excellence. I can't find the exact figures NIH gave for the initial year ( here is the announcement) but, I see that they added $100 million (for 5 years) in 2012 and another $100 mil (for 5 years) in 2017.

The fact that NIH is giving us some attention is positive but, we need to pressure them for much more!

 

[Solstice]

I am happy that the NIH has finally trickled a dime for ME, but to be honest - this is just a crumb! The need is so much greater. This disease has been so neglected at NIH for decades that it seems like a landfall that we got anything.

Just as a comparison, Autism has had an initiative that started in 2007, setting up centers of excellence. I can't find the exact figures NIH gave for the initial year ( here is the announcement) but, I see that they added $100 million (for 5 years) in 2012 and another $100 mil (for 5 years) in 2017.

The fact that NIH is giving us some attention is positive but, we need to pressure them for much more!

No arguments there.

 

[AndyPR]

And dragging things back on topic again, link to Cornell's Center for Enervating NeuroImmune Disease - http://neuroimmune.cornell.edu/

Foremost among cryptic neuroimmune diseases is one variously known as Myalgic Encephalomyelitis or Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease. The Center’s mission is to promote research to identify its cause(s), biomarkers, and pathophysiology in order to lead to prevention and effective treatments.

which has links to descriptions of the various components of their Research Centre.

 

[greeneagledown]

Is there any chance that we can keep posts on this thread to conversation about the funded projects and related news?

no

 

[greeneagledown]

no

come on that was a little funny

 

[AndyPR]

come on that was a little funny

No.

 

[greeneagledown]

No.

you cold as ice

 

[user9876]

Re-the cytokines – wouldn't it be relatively straightforward to test the nano sensor with blood from people who don't have ME but do have other conditions known to raise cytokines? It would be interesting as well.

To validate the nano-needle approach samples would need to be tested against a range of different illnesses. Otherwise it could just be a ill detector not an ME detector. It would be interesting if there were some clashes as well.

 

[user9876]

@Janet Dafoe (Rose49) not an original idea I know but could Ron try phoning Francis Collins, I know he has done so before. Has that man any conscience, I thought he was supposed to be one of the good guys....would it be worth a shot....

Its not up to Collins to overrule committees. The NIH isn't his fiefdom to do with what he likes but it follows processes such as peer review.

 

[Nielk]

Its not up to Collins to overrule committees. The NIH isn't his fiefdom to do with what he likes but it follows processes such as peer review.

Yet, Nath claimed in his presentation that Collins was moved to start the NIH ME/CFS study based on Brian Vastag's letter in Wapo to him.

Doesn't sound like on official process there.

 

[adreno]

Yet, Nath claimed in his presentation that Collins was moved to start the NIH ME/CFS study based on Brian Vastag's letter in Wapo to him.

That was an open letter. If Collins was swayed by a private phone call that would be the height of corruption.

 

[user9876]

Yet, Nath claimed in his presentation that Collins was moved to start the NIH ME/CFS study based on Brian Vastag's letter in Wapo to him.

Doesn't sound like on official process there.

There is control over internal things that NIH staff do and then processes for funding research. I don't think it is a good idea for government officials to be overriding processes that they run (either for their own favored people/approaches or due to public pressure). If a proposal didn't get good enough reviews then he should not be overriding that. We can ask for him to look at the accuracy of the review process and change it and I think more importantly ask for more money.

Ideally Ron would publish initial work with his nano-needles so that there is more to build a proposal on. Doing so would also make it harder for reviewers to turn down.

 

[Wally]

@AndyPR

I respectfully disagree with your view/desire that replies on this thread should be limited to the "...conversation about the funded projects and related news ... " (See, AndyPR replies at Reply No. 209, Reply No. 220 and Reply No 228).


I understand that you believe the thread will have more "clarity", if the discussion is limited to the four entities, individuals or project proposals that received these awards, but this is not how you titled this thread or asked for the discussion to be limited in your first post.


Instead of trying to change the discussions that has already developed on this thread, perhaps it would be more appropriate for you to start a new thread. Your new thread could identify both in the title and your first post, what you would like the thread discussion to be limited to.

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@Jonathan Edwards

I respectfully disagree with your opinion that "... it would be more constructive to keep this thread to a more positive reflection of the substantial funding that N.I.H. has provided." (See, Jonathan Edwards reply at Reply No 210).

This thread was not set up to limit discussion or comments to "positive" remarks about N.I.H. funding. It is your opinion that the funding amount in these awards is "substantial", but this may not be the opinion of other Forum members. To suggest any discussion related to this round of N.I.H. funding, which is not presented in a positive light, should not be posted in this thread creates a "chilling" or "unwelcome" atmosphere for Members with viewpoints different than yours.

This Forum was designed to serve as a "constructive" outlet where the patient community can engage in civil discourse that brings forth different ideas/opinions and viewpoints about this illness. To try to now narrow the discussion allowed on this thread (as stated in my reply to AndyPR above) seems to be both unfair and dismissive of alternative viewpoints.

Unless, replies on this thread need to be moderated/removed because they violate a procedure/rule for posting on the Forum or go beyond commenting about issues related to these announcements (such as using this thread to draft thank you notes, letters or petitions as an advocacy project). I believe this thread should remain open for both positive and negative (or even neutral) views/discussions related to the release of the award announcements. (*Note - As you are aware detailed discussions about proposed advocacy projects arising from these announcements have already moved on to the "Advocacy and Fundraising" and the "Community (Members Only)" sections of the Forum.)

*Edit - correction made to the last sentence of this post to correct where some discussions related to advocacy have moved on to.

 

[Wonko]

To validate the nano-needle approach samples would need to be tested against a range of different illnesses. Otherwise it could just be a ill detector not an ME detector. It would be interesting if there were some clashes as well.

ATM in the UK even an ill detector might be helpful as our medical people don't seem very good at detecting ill people.

 

[AndyPR]

Respectfully, I'll remind you that the title of the thread is "ME/CFS Collaborative Research Centers & Data Management Center Announcements". It's not "Ron's failed bid" or "NIH delivered the money they promised but we need more". I'm in no way trying to shut down conversation, just take any major discussion elsewhere. If somebody visits this thread afresh and is interested in, as a very likely example, who has been funded or what are the plans of each centre, all things related to the thread topic, it's not going to be helpful to wade through pages and pages about Stanford not getting funded, or the need for more money.

(*Note - As you are aware detailed discussions about proposed advocacy projects arising from these announcements has already moved on to the Advocacy section of the Forum.)

Which is the sort of thing that I'm asking for, so I don't get your problem here, respectfully.