ME/CFS Collaborative Research Centers & Data Management Center Announcements

[user9876]

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

They are based on merit in that they are based on scores from peer reviews that is what the NIH will say. The issue is that if you get the wrong peer review you get slammed with an ME proposal. In the past Lipkin has complained about that. There is a high degree of luck in who reviews something. Also limitations on budget so even good reviews can get turned down. I can see medical peer reviewers turning down nano technology proposals simply because they don't have the knowledge to understand but perhaps there are other places/committees/funders to look at funding research into nano sensors which can be used amongst other things for ME.

 

[Tuha]

Well i dont know too much about science so i will not judge if the nih choice was good. What is the point that many patietns believe in Ron's research. So we should focus on this. There is a big potential to get private donations.

I think the nano needle project is perfect one for crowdfunding campaign. Or it can be another project regarding Ron's priorities. I think it was 2-3 years ago when i did the crowdfunding campaign with linda for omf. I think with some big donations we got something between 1,5 - 2 mil. So maybe we can set up again a crowdfunding campain. It's very easy. We already have the concept for crowdfunding.

Now i make some small holidays but when i am back in a week i will write linda what she thinks about.

 

[TreePerson]

I agree that it may be to do with the not playing by the rules slightly off the wall thing. But we pwme absolutely need that and humanity has always needed people like Ron to break the mould and carry us forward. So we must do all we can to support him.

 

[necessary8]

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.

Oh, it's quite easy, I just read this and felt an overwhelming stench of bullshit. I'd say they did us the courtesy of very clearly proving how they're not merit-based, and how it wasn't a fair selection, by writing those outrageous reasons.

Seriously, please read that post, everyone. Read it, and try to tell me after reading it that "Oooh, idk, maybe it was a fair decision, who are we to tell?". This is some riddiculous shit there. By writing this they basically admitted they have zero actual valid reasons for his application to be declined.

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.

I agree that we should focus on making them accept Ron's next grant application, not on changing the decision on this one, because that they just won't do. But I think if we expose their bullshit reasons for refusing this one, they will be more inclined to accept the next one.

 

[AndyPR]

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

Yep, ME-pedia confirms this (first clear reference I could find) - http://me-pedia.org/wiki/National_Institutes_of_Health

 

[Seven7]

NIh really does not wnat the puzzle to be solved, do they!

 

[Londinium]

AT LEAST on par with that of Hanson and Lipkin, and obviously better than this Jackson Laboratory dude

Personally, I'm actually more excited about this Jackson Laboratory dude than I am with that of Lipkin, whose work often seems to rely on post-hoc subgroup analysis. That said, Lipkin carries a lot of sway within NIH so keeping him focused on ME/CFS is also welcome.

 

[Jan]

Has the ME pot reached the total funded for male pattern baldness yet?

Lol, I know I sound so ungrateful, but, jeez we're supposed to be so grateful for the tiny offerings, compared, to say MS, RA etc. The funding is so far off what the disease burden merits it's still almost laughable.

 

[Hajnalka]

(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).

I'm not on Twitter, but just had a look at the comments and agree with @Londinium.

Appreciate the image, a welcome change from the business people with coffee mugs.

https://twitter.com/i/web/status/913030725510692867

(Edited for clarity)

 

[Orla]

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.

Yes I agree with this on the whole.

About the reviewers comments, I think a reviewer's job is to make critical comments and to look for potential pitfalls, though they should also make positive comments on anything they think is good. The NIH should then evaluate then and they wouldn't necessarily have to agree with every reviewer comment.

I know sometimes reviewers can scupper a project (this can be deliberate if they have a certain view of the illness and they want to hamper research into other areas, I think this has happened in the UK, but I doubt this was the case here. It was probably a reviewer from outside the field who reviewed, which might have led to some things looking odd to them, like the contact with patients). But I don't think we can automatically assume that every negative comment was agreed to by the NIH (e.g. they funded Maureen Hanson who's son has ME, and another researcher who I think hasn't published in the area - I am happy these people got money as the teams look good).

There could be an element of luck-of-the-draw though with reviewers you could get, and the NIH might be restricted to some extent with what they are allowed to do (i.e. they probably can't totally override a negative review as otherwise the process would be pointless). The applicants also probably had to meet some sort of criteria that Ron's team may not have met (I got this impression before, that there could be an issue with overly narrow criteria for applicants.)

I think it is important to primarily thank them for the centres they have funded, for now, but it might be worth still pushing for more funding, though I wouldn't know how to go about that.

 

[Wonko]

Has the ME pot reached the total funded for male pattern baldness yet?

Lol, I know I sound so ungrateful, but, jeez we're supposed to be so grateful for the tiny offerings, compared, to say MS, RA etc. The funding is so far off what the disease burden merits it's still almost laughable.

I was thinking more about a comparison with the white house coffee budget - but I decided not to post as I couldn't find any figures for that, it seems they may be confidential lol

 

[Orla]

I'm not on Twitter, but just had a look at the comments and agree.

Appreciate the image, a welcome change from the business people with coffee mugs.

https://twitter.com/i/web/status/913030725510692867

I've just put a positive comment. I think it works better if we thank them for what good they do and then push for more money for more good researchers.

 

[Hajnalka]

Thanks @Orla! Yes, that's what I meant, too (not sure if it was clear from my post, now edited).

 

[greeneagledown]

Personally, I'm actually more excited about this Jackson Laboratory dude than I am with that of Lipkin, whose work often seems to rely on post-hoc subgroup analysis. That said, Lipkin carries a lot of sway within NIH so keeping him focused on ME/CFS is also welcome.

I do think Derya Unutmaz sounds pretty cool. I was just noting that he doesn't have a CFS background and the reviewers told Ron Davis he was turned down partially because of his lack of CFS publications. Unutmaz has some preliminary findings suggesting t-cell dysfunction, which is in accord with Mark Davis's recent work, so that is very cool.

 

[ivorin]

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.

The amount of bullshit served by the reviewers rivals the worst cases of nepotism I see in my country, and I'm Croatian, where people pride themselves on being corrupt.

 

[Jo Best]

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!

Janet, I'm so sorry, I was waiting to read your response as I hoped there'd be some benefit because of the collaborations, as others have suggested, but I see from your replies that this isn't the case.

Wishing the best of luck with the upcoming application and agree the message NIH needs is that a massive increase in funding is needed because we need and deserve all the excellent grant applications to succeed.

I'm with Ian Gibson in his remarks at IiME Research London conference when he says he doesn't believe the usual arguments that there's no money to be found or not enough to go around.

From their submissions in 2015 to NIH in response to the P2P and IOM reports:

We suggest that the NIH invest $50 million per year for the next five years in biomedical research into ME/CFS, and provide correct and current education into the disease which will, in turn, raise appropriate awareness.

This would mean an investment of $250 million over 5 years.

This amount will still be less than the documented annual cost of ME/CFS of $1 billion as noted in line 6.

This will create scores of biomedical research projects, lots of potential international collaboration, new ideas and new skills to enter the ME/CFS research area.

This will facilitate the harnessing of the full potential of academic and research institutes.

This will attract new, young researchers into the field of ME/CFS – this the charity has proven already with our BCell/rituximab project with UCL where a young researcher is drawn into this exciting area of research [21]

It will galvanise science and eventually form pockets of expertise which will create the centres of excellence for the future.

We suggest trying this for a 5 year period.

http://www.investinme.org/IIME-Newslet-1501-01.shtml

The onus is on the IOM and P2P to honour those good points from these reports – and to translate these into action.

Clearly a dramatic and immediate increase in funding for biomedical research needs to be made.

IiME suggested $250 million dollars for the next five years.

This problem needs to be fixed so the clear message from IiME to NIH and IOM is – FIX IT!

This will be a long haul.

Those in NIH and CDC – as well as those in UK MRC - and the respective government health ministers who have been responsible for ME research and funding and guidelines over the last generation have been incompetent, or worse. So lessons have to be learned from these past failures to ensure the same fatal mistakes are not made again.

As we ended our P2P report evaluation - Words are fine and Progress is a fine word – but change is its motivator – and it is action that delivers change.

These organisations and those leading them will be judged by their actions.

The task now is to implement the good points of this new acceptance of ME as being the real disease that patients already know it is.

http://www.investinme.org/IIME-Newslet-1503-02.shtml

 

[Orla]

Thanks @Orla! Yes, that's what I meant, too (not sure if it was clear from my post, now edited).

Hi, Yes I knew that was what you had meant. Thanks to yourself and @Londinium for highlighting it. The ones on Frances Collins twitter were more positive (I commented there also).

 

[ivorin]

Oh my god, I was mad before, but this is just pure bullshit on so many levels.

I say it's time to do a full-on storm of the NIH. Petitions, emails, social media, everything. I believe NIH's attitude towards Ron and Stanford is currently the single biggest obstacle in us getting back to health as soon as possible. So let's do something about it. Let's make an organized effort to pressure them.

First, here is their facebook post about it - https://www.facebook.com/nih.gov/posts/10155507737816830 I suggest we go comment on it.

Then we go tweet at:
https://twitter.com/NIHDirector - Collins
https://twitter.com/nindsdirector - Koroshetz

Then we email them at grantsinfo@nih.gov and call them at 301-496-4000

But be *polite*. Don't insult them. Thank them for spending money on ME/CFS research. But also insist that we patients want Ron Davis and his team to get funded most of all. That we believe it's the best team to solve this illness, far above the rest. That we are really disappointed this RFA didnt go to them. That we would like them to get as much funding as they request. Again, be polite about it. Polite, but firm.

Did all of it, I suggest we all do the same, sometimes these things make a difference. Sometimes.

 

[Valentijn]

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

The three selected are excellent choices. If you think otherwise, please provide evidence of their lack of merit.

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.

How can you be an objective judge when you haven't seen any of the proposals or reviews? You seem highly biased in favor of OMF, to the point that you ardently believe they were the most deserving without even knowing who some of the alternatives are.

By writing this they basically admitted they have zero actual valid reasons for his application to be declined.

It seems more likely that all of the centers were excellent options. Instead of some losing out due to being flawed, they were probably excluded because another option was a bit better. Or because they simply had a better application. Not everyone could win ... at least, not yet.

It's disturbing to see the winning ME researchers being attacked as somehow being not good enough, just because some people wanted to see someone else get funded.

 

[ivorin]

The three selected are excellent choices. If you think otherwise, please provide evidence of their lack of merit.


How can you be an objective judge when you haven't seen any of the proposals or reviews? You seem highly biased in favor of OMF, to the point that you ardently believe they were the most deserving without even knowing who some of the alternatives are.


It seems more likely that all of the centers were excellent options. Instead of some losing out due to being flawed, they were probably excluded because another option was a bit better. Or because they simply had a better application. Not everyone could win ... at least, not yet.

It's disturbing to see the winning ME researchers being attacked as somehow being not good enough, just because some people wanted to see someone else get funded.

See Janet Dafoe's report below on what they wrote to Ron in his review, you may think differently at least in regards to that part. I agree with the fact that all of the winners have definite merit.

"

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.

"