Open Medicine Foundation (OMF) Receives Another Large Donation $350k for Severely Ill Big Data Study

[leokitten]

Phase 1 of the End ME/CFS Project is fully funded!
$1 million ME/CFS Severely ill Big Data Study
We are thrilled to announce that we just received $350K from a tremendously generous anonymous donor for the ME/CFS Severely ill Big Data Study. This adds to our $500K and other incredible donations that we have received from generous and engaged donors via donations, recurring donations, crowdfunding efforts and fundraisers all over the world.
We will continue our efforts towards funding the next phase of the End ME/CFS project
and in bringing thought leaders together in global collaboration.
Now let's find a biomarker!
(check out details on our website)

It takes a community to make this happen and we are grateful beyond words
for your encouragement, engagement and support.
THANK YOU!

With much appreciation and HOPE!

Linda
Linda Tannenbaum
Executive Director
Open Medicine Foundation
Collaborating to fast track answers
www.openmedicinefoundation.org

 

[waiting]

Truly wonderful. But, as I just posted on MEAction's site, how typical is this that public & private donations are required to fully & properly fund research studies?

Does it happen in other areas of research -- or is this unique to ME research?

 

[aimossy]

Wonderful!

 

[Sasha]

This is GREAT. Yes, the NIH should be funding this but the money is in the bank now and they can just get on with it and get it done.

 

[A.B.]

They're also doing a methyl B12 and methyl folate study on patients with MTHFR. It's already funded and underway.

Will this put our forum debate to rest?

 

[alex3619]

Will this put our forum debate to rest?

Questioning is often good. What it will do is give us higher quality data to talk about.

 

[leokitten]

Truly wonderful. But, as I just posted on MEAction's site, how typical is this that public & private donations are required to fully & properly fund research studies?

Does it happen in other areas of research -- or is this unique to ME research?

This is typical in other diseases as well, particularly in the beginning when not enough is known about the disease and preliminary observations and progress needs to be made. With preliminary data hypotheses can then be generated. The grant process at the NIH is geared towards hypothesis-driven studies based on existing evidence, they don't have many mechanisms to fund exploratory studies that don't have a hypothesis.

 

[Billt]

Let's find an answer. Hope the money help's do that ..

 

[Gingergrrl]

I got the same email this morning and was so happy to see that this study can now get started!!! Kudos to them for not giving up and shame on the NIH when this study finds something helpful which I believe it will.

 

[Dolphin]

This is typical in other diseases as well, particularly in the beginning when not enough is known about the disease and preliminary observations and progress needs to be made. With preliminary data hypotheses can then be generated. The grant process at the NIH is geared towards hypothesis-driven studies based on existing evidence, they don't have many mechanisms to fund exploratory studies that don't have a hypothesis.

Also, the NIH (or similar bodies) only fund a percentage of applications. If there is little or no other funding, those ideas that aren't funded may never get explored. So private funding is very important.

Also, outside the US, the amount given to health research budgets is relatively small when one considers the number of illnesses there are and that a lot of health research money goes on non-illness specific studies. I think some people think that because governments (outside the US) tend to be responsible for funding a health system, they're also responsible for funding health research. However, as I say, the health research budgets aren't that big per illness. If groups are organised, they can often raise a lot more than what the government funded bodies give. I recall, for example, looking in to figures for MS a few years back and something like 10 times as much was being raised privately in the UK for research as the Medical Research Council (MRC) was giving out.

If we want progress sooner rather than later (later being decades or centuries in the future), I think raising money privately is very important.

 

[waiting]

Also, the NIH (or similar bodies) only fund a percentage of applications. If there is little or no other funding, those ideas that aren't funded may never get explored. So private funding is very important.

Also, outside the US, the amount given to health research budgets is relatively small when one considers the number of illnesses there are and that a lot of health research money goes on non-illness specific studies. I think some people think that because governments (outside the US) tend to be responsible for funding a health system, they're also responsible for funding health research. However, as I say, the health research budgets aren't that big per illness. If groups are organised, they can often raise a lot more than what the government funded bodies give. I recall, for example, looking in to figures for MS a few years back and something like 10 times as much was being raised privately in the UK for research as the Medical Research Council (MRC) was giving out.

If we want progress sooner rather than later (later being decades or centuries in the future), I think raising money privately is very important.

Do you recall what the public- private ratio was for other diseases?

 

[Dolphin]

Do you recall what the public- private ratio was for other diseases?

I didn't have that data. There are probably lots of illnesses where there is not much money raised privately so the ratio might be different. But it most likely leads to less public money also as there are fewer researchers making applications. So one might get one or two studies publicly funded a year (or one or two ever few years) which is a slow way to make progress.

Saying it's the government's responsibility to give money for research is likely not a good strategy if one wants research progress relatively quickly.

If a community puts its mind to raising money, (outside the US) it can often raise more than even what is "fair" for an illness to get because the total health research budgets are not that big. And the more private research there is, the more applications there should be going in for public funding. [The system didn't work so well in the UK for many years (private studies leading to public funding) because of a bias in the MRC. I personally spent a lot of time complaining about the MRC and how it was behaving e.g. spent a long time on a submission the Gibson Inquiry. ]

 

[Dolphin]

Janet Defoe has posted on Twitter today that her husband Ron Davis is going to keep applying for NIH funding. Getting this private money isn't going to stop him looking for more public funding

https://twitter.com/JanetDafoe/status/637298203788886017
Janet Dafoe ‏@JanetDafoe 6h6 hours ago
@TomKindlon @Firestormer Ron Davis is going to apply for NIH funding every cycle. He is never giving up!

 

[Dolphin]

Ron Davis describes in this video (I think it was) how he was turned down when he applied for NIH funding. But once he is able to get some data from the (privately funded) research he hopes it will help him win public (NIH) funding.

 

[Thinktank]

Some very interesting times are ahead of us! OMF, Lipkin/Hornig, etc.

 

[Sasha]

This is turning now into a very good year! We've had such great news recently and it seems that the tide might be turning at the NIH.

 

[jimells]

Saying it's the government's responsibility to give money for research is likely not a good strategy if one wants research progress relatively quickly.

Especially when the agencies have stated over and over that they will not fund the research. But beating NIH over the head in regards to recent grant rejections seems to have made enough noise that private donors are writing more checks.

So maybe it's a good strategy after all.

 

[JAH]

Ron Davis describes in this video (I think it was) how he was turned down when he applied for NIH funding. But once he is able to get some data from the (privately funded) research he hopes it will help him win public (NIH) funding.

I wouldn't be surprised if this video was the inspiration for one of the big donors.

I think Ron Davis is the best advocate for CFS we've ever had...maybe one day we'll look back at this fundraising accomplishment, and more importantly the results of the study as a turning point for us.

Great, great news, JAH

 

[rosie26]

It's getting better and better - about time! Great news.

 

[halcyon]

I think Ron Davis is the best advocate for CFS we've ever had...maybe one day we'll look back at this fundraising accomplishment, and more importantly the results of the study as a turning point for us.

Agreed and I think this study has the potential to really move the field forward. I know it's petty, but if it does I hope it's well remembered as the study that the NIH refused to even entertain.