ME/CFS Collaborative Research Centers & Data Management Center Announcements

[Groggy Doggy]

Vicky Whittemore on the NIH Review Process

http://solvecfs.org/Guest+Perspective:+Vicky+Whittemore+on+the+NIH+Review+Process

 

[Janet Dafoe]

That's a third-hand report from a source which is extremely invested in a specific outcome

My post quoting Ron about the review is not third hand or a rumor. It was Ron sitting with the review in his hands directly dictating to me what to say. And yes, of course he is invested in getting funded.

 

[RogerBlack]

Last I read, male pattern baldness was getting $16 million--so we're almost halfway there.

I am unsure this is actually true.
I went through grantome some time ago and did some searches, and could find no research on male pattern baldness.
There was a moderate amount of research on baldness - but it was an odd genetic cause of early baldness in both men and women, not male pattern baldness.
In principle a cure for this may 'cure' male pattern baldness, but it is not research into MPB.

 

[me/cfs 27931]

Very glad the NIH has increased biomedical ME/CFS funding. Very disappointed Dr. Davis didn't get funding. Doubly disappointed there is no NIH collaborative research center on the west coast.

 

[MonkeyMan]

• There are at least 1 million people in the US with ME/CFS, that's at least 1 in 323.
• There are 565 billionaires in the United States.
• That means, statistically, at least 1 US billionaire has ME/CFS (assuming that ME/CFS strikes at random; if anything, it seems to strike "strivers/achievers" disproportionately often).
• Even if none of the 565 US billionaires has ME/CFS, the chances are high that one of them has a child or spouse with ME/CFS.
• Ron Davis is asking for 5 million dollars across 5 years ... i.e., 25 million dollars ... to solve this thing.
• 25 million dollars is 2.5% of 1 billion dollars.
• We can assume that anyone afflicted with ME/CFS (or who has a child/spouse with ME/CFS) would be willing to part with 2.5% of their wealth if they were aware that it would probably lead to a cure (wouldn't you??).

So why have no billionaires stepped up? I have only one explanation I can come up with ...
Lack of awareness of the incredible work that Ron Davis and the OMF are doing!!!

And I'm just talking about billionaires. The same logic should apply to people with hundreds of millions of dollars (and there are a LOT more of those people out there). Super-rich people with a vested interest in solving ME/CFS must be out there; it's just a matter of finding them. So ... how do we find them???

 

[Nielk]

My post quoting Ron about the review is not third hand or a rumor. It was Ron sitting with the review in his hands directly dictating to me what to say. And yes, of course he is invested in getting funded.

If being invested in the disease disqualifies one of telling the truth, we would all have to be disbelieved.

It's a ridiculous statement.

Janet Dafoe should not be put into a situation where she has to defend her husbands words.
These senseless put downs need to stop now!

 

[JamBob]

I'm so gutted that they haven't funded Ron - it's heartbreaking to think that this visionary man and his family and team of top scientists who have already given so much to the field are being held back by a lack of funds that are a drop in the ocean of the NIH's budget. I can only imagine how heartbroken he, Janet, Ashley, Whitney and the team must be feeling.

It's bad enough to get a knock back on the grant but the review comments seemed downright insulting to Ron and Janet. Plus it seems strange the way that they denigrated Stanford - as it's always featured as one of the top ranked universities in the world.

We patients have to step up the donations but also we need to find someone with money. I follow Faustman Lab at Mass General and she can't get "official" grants and is only able to research a cure for T1 because of patient donations and philanthropy from Lee Iacocca (whose wife died of T1). There are only 1.25 million T1s in the US - so it's not an incomparable situation.

There has to be a wealthy family out there who is struggling with this disease. I was even thinking whether it would be worth approaching Lady Gaga. I'm not up on contemporary pop music but it was all over the news this week that she is struggling with Fibro and has made a documentary about her suffering. Maybe she would get on board with the research if it seemed like there would be a useful outcome for her.

 

[MonkeyMan]

We patients have to step up the donations but also we need to find someone with money. I follow Faustman Lab at Mass General and she can't get "official" grants and is only able to research a cure for T1 because of patient donations and philanthropy from Lee Iacocca (whose wife died of T1). There are only 1.25 million T1s in the US - so it's not an incomparable situation.

There has to be a wealthy family out there who is struggling with this disease. I was even thinking whether it would be worth approaching Lady Gaga. I'm not up on contemporary pop music but it was all over the news this week that she is struggling with Fibro and has made a documentary about her suffering. Maybe she would get on board with the research if it seemed like there would be a useful outcome for her.

Yes. Lady Gaga is worth $275 million. Ron needs less than a tithe of that.

 

[MonkeyMan]

More food for thought ... (all of this data is available online)

• 5000 US households are worth more than $100 million dollars.
  
• The average household has 2.58 people in it.
  
• So that's roughly 12,900 people who live in households worth over $100 million.
• Statistically, at least 40 of these people are likely to have ME/CFS.
  
• If just 5 of these 40 people were each to give Ron $5 million, they each would be shelling out 5% of their net worth, at most.

 

[Jesse2233]

I have posted an updated draft for a petition to the NIH here. Please take a look and give me feedback. I want to make sure it balances gratitude to the NIH for the funding increase and respect for the respects that won with urgency and a strong rationale for funding Dr Davis

 

[ivorin]

I have posted an updated draft for a petition to the NIH here. Please take a look and give me feedback. I want to make sure it balances gratitude to the NIH for the funding increase and respect for the respects that won with urgency and a strong rationale for funding Dr Davis

I would use something like "patient community sttongly urges you to reconsider funding" instead of "must fund".

 

[Valentijn]

My post quoting Ron about the review is not third hand or a rumor. It was Ron sitting with the review in his hands directly dictating to me what to say. And yes, of course he is invested in getting funded.

I guess we have to take your word for all of that, since we're not seeing any of the actual documents ourselves. I'm not going into any details, but I've seen conflicting statements lately which have impacted my trust of some sources, and I find it wisest to proceed with caution in general.

 

[Valentijn]

I have posted an updated draft for a petition to the NIH here. Please take a look and give me feedback. I want to make sure it balances gratitude to the NIH for the funding increase and respect for the respects that won with urgency and a strong rationale for funding Dr Davis

I would not sign or support any petition without more information regarding the proposals and refusals. I have great admiration for Ron Davis as a researcher, but will not "demand funding" for any grant proposal which I haven't seen.

 

[Jesse2233]

@Valentijn is there an existing model for researchers to share their grant proposals with the public? I worry that a review board might see this as a conflict of interest that could bias the study later on. Anyway I certainly respect your decision

My support for a petition is based on Dr Davis' credentials, team, results thus far, and the fact that they're so focused on immediate treatment options

 

[adreno]

@Jesse2233

The grant money has been given and cannot be taken back. The ship has sailed. I don't think a petition will serve any purpose now. However, patients can advocate for the OMI to be funded by another grant.

 

[Jesse2233]

@Jesse2233

The grant money has been given and cannot be taken back. The ship has sailed. I don't think a petition will serve any purpose. However, patients can advocate for the OMI to be funded by another grant.

Yes I agree completely that the ship has sailed on the funds already granted. My hope is that a petition will help push NIH to fund his new proposal being submitted 10/6

 

[necessary8]

@Jesse2233

The grant money has been given and cannot be taken back. The ship has sailed. I don't think a petition will serve any purpose now. However, patients can advocate for the OMI to be funded by another grant.

I think that's the point - we have to pressure NIH to accept his next grant. Ron has been sending one application after another, getting declined for stupid reasons, and we as patients have to show that we will not stand for it.

 

[aimossy]

I am pleased we finally have some collaborative research centers. I think you also only need to look at Ron Davis, Mark Davis and Snyder's records to know that these researchers are excellent and deserve funding and we need them funded. Excellent teams have missed out.

Based on what Ron has shared on some of the feedback there seems to be some particularly unproffessional and cruel nonsensical things in there.

COI based on having a son with ME. So does Hanson so that's bollocks.

Not having previously published on ME/CFS. Neither has Unutmaz so that's bollocks.

Stating that the nano needle is probably only measuring cytokines. Well somehow they know the answers when they aren't known - that's bollocks.

Stating Stanford is some mediocre institutional environment. What insane kettle of fish is going on here.

NIH keeps stating they need more standard grant applications and Ron Davis and Mark Davis and Snyder will have or are in process of having data that will make strong arguments for big standard grant process wins.

I am feeling like if they can't win strong funds through the standard grant process now and Ron misses out on the RO1 he has put in for we should be up in arms.

But doing anything before then may harm more than help?

I will be donating to OMF next month.

Edit: I am happy with who has been funded I would have been really happy if this included more good teams and funding. We need a freakin army!

 

[necessary8]

I am feeling like if they can't win strong funds through the standard grant process now and Ron misses out on the RO1 he has put in for we should be up in arms.

The thing is - he has been declined many times before already. This bullshit here should be our last straw to storm NIH with (polite) letters of protest.

 

[aimossy]

The thing is - he has been declined many times before already. This bullshit here should be our last straw to storm NIH with (polite) letters of protest.

I understand that and feel if Ron doesn't get the R01 he has put in for then we have major leverage to hammer NIH with.