ME/CFS Collaborative Research Centers & Data Management Center Announcements

[slysaint]

What happened about finding a philanthropist? Seem to remember a PR member offering $20,000 to find one(?)

 

[AndyPR]

From Solve

Breaking News: NIH Announces Results of ME/CFS Program Awards
The National Institutes of Health (NIH) announced today the outcome of its ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) competitive consortium grants, marking an unprecedented and tangible commitment from the federal agency to the disease. The NIH announced four recipient teams; one Data Management Coordination Center (DMCC) and three Collaborative Research Centers (CRCs).

The team selected to lead the development of the Data Management Coordination Center (DMCC) will serve as the keystone to centralize, share and standardize the data of the ME/CFS Collaborative Research Centers.

• Dr. Rick Williams (RTI International) in partnership with Dr. Peter Rowe (Johns Hopkins School of Medicine (JHSM)) and Dr. Zaher Nahle (SMCI).

The three teams selected to lead the development of the Collaborative Research Centers (CRCs) represent an incredible breadth and depth of expertise from prestigious institutions.

• Dr. Ian Lipkin (Columbia University) and team, with SMCI as collaborator
• Dr. Maureen Hanson (Cornell University) and team, with SMCI as a collaborator
• Dr. Derya Unutmaz (the Jackson Laboratory for Genomic Medicine (JAX) ) and team.

Since the funding announcement was released in January, the ME/CFS community has waited anxiously to hear the results for this new era of ME/CFS research. The response to the NIH grant solicitations was strong, attracting high caliber applicants. These submissions included expertise in immunity, inflammation, neuroendocrine biology, bioenergetics, epidemiology, biostatistics, clinical care, and clinical management, some of whom were applying their talent for the first time in the ME/CFS field.

The Solve ME/CFS Initiative (SMCI) was honored participate in seven proposals during the application process. It was a privilege to work with diverse applicants, all of whom embody of our organization’s mission to make ME/CFS understood, diagnosable, and treatable. We serve as a credible scientific partner and a trusted resource for everyone who is creating value in our disease space. We will continue to maintain and pursue those collaborations with proposals that were not funded, in addition to our role with the NIH-funded centers.1

http://go.solvecfs.org/webmail/1926...6d7d23f64fac0879ded6a6c03524adbd419ea2e42b3d2

Also thread here - http://forums.phoenixrising.me/inde...to-partner-on-three-nih-funded-centers.54671/

 

[trishrhymes]

I too am disappointed that Ron Davis's bid did not get funded. I am an admirer of the work of Ron and his team, and, like many here, have donated to OMF to support his work.

However, I am also very pleased that 3 excellent projects are getting funding, and think we should not lose sight of this. Surely it is something to celebrate that the NIH has at last put some funds into good ME research. Nowhere near enough, but a good start.

I hope Ron's next application is successful.

I can't help wondering whether any kind of e-mail campaign or petition might be counterproductive in this context. NIH has to judge applications on the merits of the bids as their advisors see this. We are not in the position to make judgements on whether they were fair or not.

There were clearly more than 3 excellent bids, so some were always going to miss out. Attacking the NIH at this stage rather than thanking them for making a good start might not go down well.

 

[AndyPR]

From Bateman Horne Centre

The National Institute of Health has awarded funding for ME/CFS Collaborative Research Centers and Data Coordinating Center to collaborative research teams that include the Bateman Horne Center of Salt Lake City, Utah (BHC). This funding represents the largest single investment in ME/CFS research in the last decade. BHC is a proud partner and collaborator on two of these awards.

Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a debilitating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.

The Jackson Laboratory for Genomic Medicine (JAX) led by Dr. Derya Unutmaz has received an award in the amount of $10.6M over 5 years; the BHC is the clinical core for this award. Unutmaz says the goal of the research center is to “transform the landscape of knowledge of ME/CFS” by tracking down the immune, metabolic and microbiome changes that lead to the disease, “so that the knowledge gained through the work of the Centers become an inflection point towards the goal of treating a disease that causes terrible suffering in millions of patients.”

BHC will support both clinical and research projects by collecting the necessary samples and associated clinical data from 200 early onset ME/CFS patients and 200 healthy subjects collected multiple times over the 5 years project period. The Bateman Horne Center will work with University of Utah Center for Clinical & Translation Sciences (UU CCTS) to educate local and regional physicians on the early diagnosis of ME/CFS.

https://batemanhornecenter.org/nih-...search-centers-bhc-key-member-research-teams/

 

[necessary8]

I can't help wondering whether any kind of e-mail campaign or petition might be counterproductive in this context. NIH has to judge applications on the merits of the bids as their advisors see this. We are not in the position to make judgements on whether they were fair or not.

Forgive my choice of words, but I think after reading the reasons they gave, even a monkey would be able to make a very clear judgement that they were not fair at all.

The NIH is a government body. They are public servants. This alone gives people all the right to demand things from them.
They are supposed to act in the best interest of the patients. And yes, patients not always know what is in their best interest. But I think our patient community is much more educated on this matter than most, and it would be very beneficial for them to hear our opinions. Very loud and clearly.

I'm going to ask you this - if instead, they gave all the money to CBT/GET proponents and not to biological research, would you still say this? Because all of your arguments could be applied to that hypothetical situation as well. Recently we got word about revised NICE guidelines, removing CBT/GET from recommended treatments. This only happened because patients and activists fought tooth and nail for it.

Don't get me wrong - I'm not comparing the 3 chosen research center to Wessley and his bunch. Those 3 teams are all amazing researchers that will do good science, especially Maureen Hansen. They will give us important pieces for the puzzle. But let's not kid ourselves - they probably won't solve the disease. Not with those funds, not in this timeframe. The only ones capable of doing that with 10 million in 5 years are Ron and his team. Not only because they are the only ones having solid leads and the expertise to follow them, but also because of their streamlined process, and because they're capable of developing new biotechnologies on the fly with their nanofabrication and circuit printing, to be much faster and more cost effective. And the amount to which Ron demostrated those abilities is revolutionary. No other team has this, as far as I know.

And so just like we have to fight against the worst science, it is equally, or even much more important, that we fight for the best science. Or we will be stuck with this illness till we're old and grey.

Because it sure seems like they have something personal against him, and I'm afraid without outside pressure they might keep rejecting his grant applications forever.

Attacking the NIH at this stage rather than thanking them for making a good start might not go down well.

And this is the part where I totally agree, which is why I emphasized to be polite, to thank them for funding ME/CFS research and to also explain why we would like Ron's research funded the most. Not to attack them.

 

[AndyPR]

The National Institutes of Health announced today that it has earmarked more than $7 million in fiscal 2017 to support a multicenter initiative to study the role of genetics and other factors in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The funding will be provided to three collaborative research centers — at Cornell University, Columbia University, and The Jackson Laboratory — as well as a data management and coordinating center (DMCC) at the Research Triangle Institute.

"These important grants will provide a strong foundation for expanding research in ME/CFS, and lead to knowledge about the causes and ways to treat people affected by this mysterious, heartbreaking, and debilitating disease," NIH Director Francis Collins said in a statement.

https://www.genomeweb.com/research-funding/nih-awards-7m-fund-chronic-fatigue-research-consortium

 

[adreno]

I think now is not the time to be sending petitions and complaint letters to Collins, which probably would just serve to cement the idea that PwME are difficult. Now is the time to send thank you notes, perhaps with a PS that you hope for funding of OMI in the future. Yes we did not get everything we wished for, but we still got a pretty big cake and that should be cause for some celebration.

 

[BurnA]

I can't help wondering whether any kind of e-mail campaign or petition might be counterproductive in this context. NIH has to judge applications on the merits of the bids as their advisors see this. We are not in the position to make judgements on whether they were fair or not.

Agreed.

The NIH cannot be seen to be swayed towards individual grant applicants, by petitions or it would be like sending an open invite for everyone to petition them.

They at lease have to be seen to be merit based decisions.

Petition for more money, more grants, whatever, but focusing on a individual application wouldn't be wise.

 

[necessary8]

They at lease have to be seen to be merit based decisions.

Then let's pressure them to actually be merit based. Because clearly they're not.

 

[adreno]

Then let's pressure them to actually be merit based. Because clearly they're not.

And how do you know that? The NIH has a limited pot of money and have to fund the centers that they judge to have the best chance of moving the research forward. I think none of us here are in a position to judge who that is.

 

[Cinders66]

Was it always the intention to fund three centres regardless of number of applications or are they saying just three met their criteria? It's obviously good news, committed funding over five years, but obviously the other research teams seemed worthy. If they're sticking to three to keep funding down then it's money not quality/number of research applications deciding speed of progress

With money going to lipkin and Hanson then patients can rally behind OMF instead of spreading their donations across centres?

 

[Londinium]

I agree with the above. The best thing to do, IMHO, would be for the NIH to receive thanks for funding these centres, also noting that the number of high quality applications received meant that not all could be funded, and expressing the hope that the NIH would be amenable to looking favourably on applications from these teams in future. Ideally, this would be coordinated by ME Action or similar rather than have the NIH receive an avalanche of separate emails.

Reacting to the biggest increase in funding for ME/CFS from the NIH with criticism for not picking a specific researcher is not exactly going to win hearts and minds. (I was dismayed to see that the NIH twitter announcement seemed to have nothing but critical responses underneath - sometimes we seem to be determined to alienate potential allies).

 

[AndyPR]

While I was as surprised as most at the fact that Stanford/OMF weren't funded, possibly how things have ended up might work out for the best. Rather than relying in a semi-religious way that just one team will achieve the miraculous and find a cure, we need multiple teams building up a collective knowledge of what is going on with us and this funding goes towards this. The OMF does a fabulous job at raising the profile of Ron's work and my guess would be that it then attracts the majority of donations from patients, so NIH funding other teams makes, to a certain extent, more sense to me in that way.

And without all centres/teams and the NIH revealing all the details of, and judgements on, each application, we can't make objective judgements. It's equally possible that the teams who won the grants were able to tick far more of the boxes that NIH were looking for than Stanford and won fair and square under the rules that NIH operate under - after all, we love Ron and his team for working outside of the rules in an effort to accelerate things, but the NIH cant, and won't, do the same, so perhaps, sadly, this has come back to affect this decision.

 

[Londinium]

Was it always the intention to fund three centres regardless of number of applications or are they saying just three met their criteria? It's obviously good news, committed funding over five years, but obviously the other research teams seemed worthy. If they're sticking to three to keep funding down then it's money not quality/number of research applications deciding speed of progress

Yes, I seem to recall they always said 2 or 3 would be funded.

 

[greeneagledown]

And how do you know that? The NIH has a limited pot of money and have to fund the centers that they judge to have the best chance of moving the research forward. I think none of us here are in a position to judge who that is.

Being objective, I think it's fair to say that 1) the collaborative team Ron assembled was the most impressive of any of the applications, and 2) the CFS research he and his team have already done, even if not published, is AT LEAST on par with that of Hanson and Lipkin, and obviously better than this Jackson Laboratory dude. In other words, they had the best team and the best leads.

Based on the reasons they gave Ron, how can anyone say this has been a fair, merit-based process??

 

[Wonko]

I can't, but not being a science person I also can't say that it wasn't

 

[greeneagledown]

I think the bigger concern here is that based on the rationale that was offered to Ron for his denial, this is just more evidence that the CFS review process at NIH is still broken, even though they said they would fix it. Collins needs to personally step in. Maybe hand-pick the people who will be reviewing CFS grant applications.

 

[Jan]

Call me a cynic, but anyone would think they don't want ME/CFS cracked.....yet.

 

[Ben H]

Ron says: Our grant had a number of senior scientists at Stanford, including myself, Mark Davis a world renowned immunologist, Mike Snyder, Chair of Stanford Genetics dept, ranked the best genetics department in the world, and expert in big "omics" data, Craig Heller, a world expert in exercise physiology and fatigue, William Robinson MD, expert in autoimmune and Lyme's disease, Lars Steinmetz, an expert in complex genetics and mitochondria, as well as scientists from other universities, including, Robert Naviaux, USCD, world renowned expert in metabolomics and mitochondria physiology, Curt Scharfe, Yale Univ, expert in mitochondrial genetics, Wenzhong Xiao, Harvard, expert in bioinformatics and big data analysis, Robert Phair, CEO of Integrated Biioinformatics, Inc, which models complex biochemical pathways, Lucinda Bateman, of the Bateman-Horne Center, one of the foremost ME/CFS experts in the country, and Susan Levine, another well-known ME/CFS physician.

One of the major complaints was that I had no publications on ME/CFS. One of the criteria of this RFA was to bring new people into the field, which is impossible if reviewers exclude investigators without prior publications. The team I put together would be phenomenal for this field. All of us have experience and a myriad of publications that are directly relevant to the study of ME/CFS.

The review complained that our institutional environment was "mediocre". The Stanford office that reviews all Stanford grants told me that they had never seen a Stanford rating anywhere close to that low in their entire history. It's absurd to think that Stanford is not an excellent institutional environment.

They argued that my involvement with OMF constituted a conflict of interest. In fact, our interests are aligned, not in conflict! This is mystifying given the fact that the RFA required applicants to work with an NGO.

They didn't like our nano needle instrument. They said it's probably only measuring cytokines, but there's no data for that. They said it wasn't certified as government-approved for medical use with patients. This was mystifying because one of the aims of the grant was to develop the nano needle for medical use!

They complained that Janet was part of the community outreach part of the grant because she is my wife.

They said I had a conflict of interest because my son has ME/CFS.

They didn't like it that I had put out videos with preliminary results and ideas to the patients on PR and elsewhere because it was unpublished and not peer-reviewed.

There were a number of other criticisms that were mostly about scientific issues, that were mostly wrong. For example, we were proposing to use IPS cells, which they said wasn't validated, but in fact, it's used extensively and it's being used in the NIH Intramural study!

This is not a complete list, but I think you can get the picture from these examples.

We of course will continue to write grants until NIH funds us (we are submitting an R01 grant on Oct 5), and we will continue to actively work with OMF to raise private donations, but this is definitely a big setback. I was especially sad on Monday when Whitney was communicating with us on ativan and he cried in pure anguish, knowing that we can't help him as fast as I'd like to.

So so disappointed with this. I don't understand their logic at all, its seems contrary but blatantly so and some of it is just absolutely untrue (institutional environment 'mediocre'..hmm okay).

I like the idea of calling out this publically, as much as possible. Polite but stern comes to mind. If they are writing stupid rebuttals they deserve to be called out on it, for all our sakes.

Pleased that the others have recieved some funding.


B

 

[A.B.]

I think it's best if we ask Collins for funding for the nanoneedle specifically, and for more research centers as soon as possible. Because the NIH will never say that the review was unfair and proceed to take a grant away from one of the other three centers.

Let's also not turn this victory into a drama. Research centers are a dream come true. I have no doubt that all three are good choices. We just need more funding in general.