Janet Dafoe's Heartfelt Response to NIH Rejection of Ron Davis 's Research Center

[Cort]

The end of this is pretty heartbreaking....

From Janet

Ron Davis and Raeka Aiyar rewrote parts of their center grant and submitted it yesterday to NIAID. It’s for an R01 grant (highest possible award is $499,000 per year for 5 years). If they get it, they won’t see any funds until at least next July. Meanwhile, Whitney is still lying there, as are millions of others suffering and losing significant parts of their lives.

I would just like to comment about the idea of NIH working with the 7 who didn’t get grants to help them improve them. I can only speak for Ron’s grant, but there is no way that that idea is even relevant to their grant. It was already a really good grant. And those reviewers added nothing that could improve it. The review was useless, biased, and wrong.

What they need to do is get good reviewers, take responsibility for the hole they have dug for ME/CFS, and make wise decisions as to how to move the field forward fast. Ron has done this himself for other fields when he sat on council. They would think about where the field needed to be. They would look at the reviews and discount the wrong, nitpicky stuff. They sometimes awarded grants to applications that were far down on the list because they were good proposals.

If someone there who knew about the field thought about the best way to move the field forward faster, they would have funded Ron and team. If they really wanted to get new, good researchers into the field, they would have funded Ron and his team. If they really want progress to be made, they would fund all 10 of the proposals. What they are doing now is just unconscionable.

The reviewers aren’t doing a good job, and no one is taking real responsibility for fast progress that aims at finding treatments fast. If people are upset that Ron didn’t get funded, I personally think that NIH should hear about it. I hate to think that they can do this and then get away with it and think the patient community is ok with this.

When Ron was on study sections or council, he always had the philosophy of scoring all the good grants high enough to be funded. Then if there wasn’t enough money only a portion of them would get funded, but no one would be saying they didn’t get good grants. Using those ridiculous scores (not just Ron’s) and saying there weren’t enough good grants is just wrong. It’s the effect of a messed up review system and no one taking responsibility to make sure the reviews are reasonable.

Ron’s reviews rated Stanford as “mediocre” as a supporting institution, which is nonsense, and had scientific comments that were just plain wrong (among other ridiculous things). No one’s grant should be judged in this way. The system needs fixing. Every scientist involved in ME/CFS research should be volunteering to be on study sections and review grants. And people should be careful not to collaborate with too many people because they then can’t be on a study section for those people’s grants. We don’t want all the good reviewers to have to recuse themselves.

This is a very very complex and difficult problem, but it seems to me that it all comes down to there being no one with power at NIH actually taking responsibility for the illness of over 2 million American citizens. That is their job. They are stuck in their bureaucracy.

I know it may seem like I’m just biased and advocating for my husband, but really, I’ve seen what he has done for 50 years, I know the amazing people he is getting on board to help, and I know that he should be getting whatever funds he needs. He does not think he can do this alone – on the contrary, he is assembling some of the best scientists in the world so that the very best people can be working on the things they do best applying it to ME/CFS.

If something doesn’t change, it’s going to take a long time. Ron is going to keep going as fast as he can, with the help of OMF raising funds and all the wonderful support of the patient community donating what they can. I just feel so sad. Ron went to Whitney’s favorite grove of Redwood trees today and cried.

 

[GG]

"This is a very very complex and difficult problem, but it seems to me that it all comes down to there being no one with power at NIH actually taking responsibility for the illness of over 2 million American citizens. That is their job. They are stuck in their bureaucracy."

I am (Not) shocked! Bureaucracies usually do a great job LOL

GG

 

[Tina]

So very heartbreaking. For all of us. I am grateful for the people who can still fight; that can still do anything.

 

[Cort]

Agreed. I don't know but I'll bet if it was up to Vickie Whittemore she would have looked at Ron's record, and the way he's gone about bringing outside researchers in, his efforts to collaborate, etc. that she would have given it to him.

"This is a very very complex and difficult problem, but it seems to me that it all comes down to there being no one with power at NIH actually taking responsibility for the illness of over 2 million American citizens. That is their job. They are stuck in their bureaucracy."

I am (Not) shocked! Bureaucracies usually do a great job LOL

GG

 

[Cort]

This is so sad,
I am in the UK so don't know if me letting the NIH know how I feel is worth anything at all.

But these decisions do affect those of us in other parts of the world too. I really pin my hopes on the cutting edge research that Ron Davis and others are doing.

What can we as a patient group do about this?

Is any lobbying the NIH going to make any difference?

Where is our very limited energy best spent?

Is it best spent trying to pressure the NIH or putting our energy into trying to get more private funding for OMF and other researchers that were not funded...... or a mixture of both

Any thoughts anyone because I really don't know?

I don't know either! Patients going after the NIH for this could help or hurt. Researchers rarely speak publicly about their reviews. If it looks like Ron is reporting this to gather patients together to force the NIH to give him money that would definitely backfire.

On the other hand the review was so picky and mean-spirited its clearly wasn't a good review.

Giving money to the OMF can only have benefits.

 

[Cort]

Yes, there is the concern that it could backfire to lobby them to fund Ron or other researchers. It may just get them digging their heels in more to try and defend their decision.

I hope one of the added bonuses of Unrest will be that it brings in extra donations to OMF

Hopefully, Unrest is proving to be a very powerful messenger for us.

 

[Farmgirl]

Hopefully, Unrest is proving to be a very powerful messenger for us.

My husband and I saw Unrest in Chicago last week. I could barely walk out if the theatre b/c if ME, but it was one of the best days I can remember in a long time. Leonard Jason was there for a Q & A afterward. I felt validated and happy in my soul...and strangely not alone.

 

[Farmgirl]

Yes, I am really hoping that it can have a big impact here in the UK in a few weeks time, the UK medical establishment is quite a hard nut to crack.

I think Jen has done amazingly, not just to make the film but her interviews, advocacy and question and answers have been fantastic

Thank you @JenB you are making a big difference

Yes, I thank @JenB, too. It had to have taken it's toll on her body.

 

[Farmgirl]

This is so sad,
I am in the UK so don't know if me letting the NIH know how I feel is worth anything at all.

But these decisions do affect those of us in other parts of the world too. I really pin my hopes on the cutting edge research that Ron Davis and others are doing.

What can we as a patient group do about this?

Is any lobbying the NIH going to make any difference?

Where is our very limited energy best spent?

Is it best spent trying to pressure the NIH or putting our energy into trying to get more private funding for OMF and other researchers that were not funded...... or a mixture of both

Any thoughts anyone because I really don't know?

If we cannot influence, we can expose.

 

[Not dead yet!]

So the absurdity continues at NIH. /nods resignedly

The last time I contacted someone at HHS, someone whose job was to protect seniors from abuse in nursing homes, and told her about my relative being forced to take medicine she didn't need and neglected otherwise until she had severe bladder infections and skin diseases that only people who are neglected can get..... she told me to talk to a lawyer because there's nothing she can do.

I had emailed her a link to the most recent review of the place which passed with flying colors, just the year before. You'd think she would at least be suspicious why that was. Nope.

The problem is systemic. The pass-the-buck cancer has nearly killed the agencies, they are in stage 4 metastatic agency cancer mode.

To make matters worse, I contacted the most "investigative" seeming news reporter in that area, and they didn't even ask me for more info. It's such a one horse town though, I can't imagine anything really exciting was in the news to push me out.

If we cannot influence, we can expose.

So then I went to the local newspaper, emailed one of the "investigative" reporters and didn't even get a reply. I don't mean to be unnecessarily negative, but it does look like private funding is the way to go.

 

[Farmgirl]

So the absurdity continues at NIH. /nods resignedly

The last time I contacted someone at HHS, someone whose job was to protect seniors from abuse in nursing homes, and told her about my relative being forced to take medicine she didn't need and neglected otherwise until she had severe bladder infections and skin diseases that only people who are neglected can get..... she told me to talk to a lawyer because there's nothing she can do.

I had emailed her a link to the most recent review of the place which passed with flying colors, just the year before. You'd think she would at least be suspicious why that was. Nope.

The problem is systemic. The pass-the-buck cancer has nearly killed the agencies, they are in stage 4 metastatic agency cancer mode.

To make matters worse, I contacted the most "investigative" seeming news reporter in that area, and they didn't even ask me for more info. It's such a one horse town though, I can't imagine anything really exciting was in the news to push me out.



So then I went to the local newspaper, emailed one of the "investigative" reporters and didn't even get a reply. I don't mean to be unnecessarily negative, but it does look like private funding is the way to go.

@Notdeadyet
Agree...private funding may give more academic freedom to researchers.

So proud at the fund raising done by so many already!

 

[Not dead yet!]

@Notdeadyet
Agree...private funding may give more academic freedom to researchers.

So proud at the fund raising done by so many already!

I kind of feel like if we just legislated against any public funding of health care, and any agencies to oversee it, and any insurances to pay for it, it might put all the bloodsuckers out of business. It might improve health care over all. However, it would also continue and make worse the rich/poor divide. Maybe the money saved could be given back to us not as "tax cuts" but as subsidy in paychecks. Get a job, get a subsidy, use it on the therapy you want. Done.

I have these gee-whiz thoughts sometimes. Obviously the most dire reason why this isn't done is because hospitals could refuse to help you if laws didn't say they couldn't. OTOH, if they don't like you for reasons of race or language skills, they still only give you minimal care even if you show them an insurance card. Before I could speak English, I was injured badly and had to get stitches. Have you EVER heard of a child getting 8 stitches without pain control? Not even a local? Hospitals will do you dirty if you aren't "PLU" (people like us).