ME/CFS Collaborative Research Centers & Data Management Center Announcements
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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.
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.
From Bateman Horne Centre
https://batemanhornecenter.org/nih-...search-centers-bhc-key-member-research-teams/
https://batemanhornecenter.org/nih-...search-centers-bhc-key-member-research-teams/
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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.
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.
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.
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.
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.
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.
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.
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Then let's pressure them to actually be merit based. Because clearly they're not.
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?
With money going to lipkin and Hanson then patients can rally behind OMF instead of spreading their donations across centres?
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).
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).
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.
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.
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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??
Based on the reasons they gave Ron, how can anyone say this has been a fair, merit-based process??
I can't, but not being a science person I also can't say that it wasn't
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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.
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
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
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.
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.