FOIA Indicates Lack of Interest Dogs Chronic Fatigue Syndrome Field

Cort

Founder of Health Rising and Phoenix Rising
Staff member
NIH Right After All?

NIH officials have been saying for years that growing the chronic fatigue syndrome (ME/CFS) field will require ME/CFS researchers submitting more grant applications. They've protested that they can't approve grants that haven't been submitted. Just give us good grant applications and we will approve them they've promised! (Or at least some of them; less than 20% of grant applications get approved at the NIH.)

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[/fright]They've been saying that for years, and quite frankly, not many people have believed them. The main grant review panel for ME/CFS - the CFS SEP - was notorious for being packed with people who knew nothing about ME/CFS. Why would anyone take months to complete a grant application for an immune study and then have it be rejected by a dentist? ME/CFS researchers, advocates have asserted, are not applying for grants because they know the system is stacked against them.

Low Rate of ME/CFS Grant Applications Dogging the Field

That argument may have been true at one time, but a recent Freedom of Information Act (FOIA) request (attached) covering from 2013 to the first part of 2016 suggests it doesn't hold water anymore. It revealed that the makeup of the CFS SEP Review Panels (the main review panel for ME/CFS) has been excellent but ME/CFS grant applications are still dismally low.

The FOIA revealed that the average CFS SEP meeting reviewed about 6 applications and that about 20 applications were reviewed a year. A 20% approval rate would result in 4 new studies approved each year or roughly 14 new studies approved over the three plus years covered by the FOIA.

From 2013 to the present, however, 26 new ME/CFS studies have received funding. Removing a few grants whose funding began in 2012 or very recently leaves us with roughly about 20 studies approved over the past 3 or so years - well above the typical 20% success rate bandied about by the NIH.

That suggests that bias may no longer be the factor it was. In fact, it suggests that the NIH might actually be quite willing to fund good grant applications when it gets them. To what could we attribute this to? A rather remarkable shift in the review panels assessing ME/CFS grant applications over the past couple of years.

New Review Panel Composition Provides Hope for the Future

After years (decades?) of review panels front loaded with pain experts, the makeup of the last three years of the Special Emphasis Review panel for ME/CFS grants has been all ME/CFS. From Dr. Klimas to Dr. Baraniuk to Jarred Younger to Alan Light to Italo Biaggioni the recent review panels have been littered with ME/CFS experts.

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[/fright]This means that ME/CFS researchers submitting their grants to the ME/CFS SEP should get a good hearing. (The reception that Ron Davis's grant got is a glaring exception but he submitted his grant to a different panel.). The word that the NIH is more receptive to ME/CFS may have started to get out as 2015 had the highest number of grant submissions (26) of the three years. (2016 started off on a low note, though, with just 5 grant applications)

The takeaway from the FOIA is that the NIH may have essentially been correct: the central problem facing this field at this point bias but a lack of interest. Researchers have simply not been submitting enough grant applications to significantly raise funding levels. That suggests we haven't attracted researchers who are likely to engage in the rigorous NIH review process.

Why is this good news? Because bias is much harder to fight than lack of interest. History has shown that researchers will embrace this field if given adequate funding, bias would be much harder to root out.

Indeed, in the last couple of years a cadre of new researchers have entered this field. Rebecca Hanson at Cornell, Armin Alaedini at Columbia, Nathanson Lubov at Nova Southeastern, David Patrick at the Univ. of British Columbia, Jarred Younger at the U. of Alabama and Derya Unutmaz at the Jackson Laboratory have all received NIH grants recently.

Request For Application Grant Package Critically Needed

Advocates have been pressing the NIH for years to do something to bolster researcher interest. This FOIA suggests that it's critical that the NIH do so, and history suggests that if it does they will be successful. With a 2006 RFA for ME/CFS resulting in dramatically increased numbers of applications, it's hard to imagine that a 2016 RFA wouldn't be much more successful. Plus, with review panels now regularly containing ME/CFS experts researchers can expect a good hearing for their grant applications.

That sounds like the ME/CFS field might, in fact, be set up for success - if it can get the funding.

Meeting / Applications Submitted to the CFS SEP (2013-2016)

2013 (1) - 6
2013 (2) - 5

2014 (1) - 8
2014 (2) - 4
2014 (3) - 6

2015 (1) - 7
2015 (2) - 11
2015 (3) - 8

2016 (1) - 5
 

Attachments

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I believe that the lack of interest is in large part because of the bias, as well as the way that applications have been treated historically. It's great that the last three years have seen a change in that, but how many are really aware of the change, let alone really trust it? If word gets out enough that things have truly changed, then perhaps this will be good news. However, I think the bias is still there, too, and that IS still something that is driving some of the lack of interest. They can say they are open and the problem is lack of interest all they want, and hopefully they are truly open, but the cause of that lack of interest still needs to be investigated and worked on before real change can be enacted.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I believe that the lack of interest is in large part because of the bias, as well as the way that applications have been treated historically. It's great that the last three years have seen a change in that, but how many are really aware of the change, let alone really trust it? If word gets out enough that things have truly changed, then perhaps this will be good news. However, I think the bias is still there, too, and that IS still something that is driving some of the lack of interest. They can say they are open and the problem is lack of interest all they want, and hopefully they are truly open, but the cause of that lack of interest still needs to be investigated and worked on before real change can be enacted.
There are a couple of places bias can show up - the foremost of which is the ME/CFS special emphasis panel that reviews the grants. Since that panel is almost fully staffed by ME/CFS experts now I trust we can drop the SEP from the bias issue now. Because the SEP panel scores the grants and a poorly scored grant will never make it to the funding stage its critical that the SEP panel have good reviewers.

Of course it's possible that most ME/CFS researchers have not gotten the message about the makeup of the review panel. That would be good news actually because we might see an nice increase as they became aware. My guess is, though, that while some did encounter bias - it was certainly present on the panel at one time - many have never tried to get a grant through.

The next stage, I believe, is that the grants go before the applicable institute to get funded. There's a much better chance for bias there.

But if my kind of back of the envelope calculations are somewhat correct ME/CFS grant applications are being funded at a pretty decent rate for the NIH.

Ron Davis's rejected grant is an exception. The rejection was so poorly done that it appeared that the reviewers had hardly read the application. That certainly smacked of bias but Ron put his grant application through a different review panel.

Almost all the ME/CFS grants that get funded come through the SEP review panel -which is the one this blog refers to.

If we can get substantial numbers of good grants before this panel we can steadily increase funding.

An RFA is the only way to dramatically increase funding that I know of - so it appears to be the way to jumpstart this field. After the RFA is done, though, the SEP becomes critical because most all the grants will go through it. That is the ME/CFS researcher representation on the SEP is very good news.
 
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There are a couple of places bias can show up - the foremost of which is the ME/CFS special emphasis panel that reviews the grants. Since that panel is almost fully staffed by ME/CFS experts now I trust we can drop the SEP from the bias issue now. Because the SEP panel scores the grants and a poorly scored grant will never make it to the funding stage its critical that the SEP panel have good reviewers.

Of course it's possible that most ME/CFS researchers have not gotten the message about the makeup of the review panel. That would be good news actually because we might see an nice increase as they became aware. My guess is, though, that while some did encounter bias - it was certainly present on the panel at one time - many have never tried to get a grant through.

The next stage, I believe, is that the grants go before the applicable institute to get funded. There's a much better chance for bias there.

But if my kind of back of the envelope calculations are somewhat correct ME/CFS grant applications are being funded at a pretty decent rate for the NIH.

Ron Davis's rejected grant is an exception. The rejection was so poorly done that it appeared that the reviewers had hardly read the application. That certainly smacked of bias but Ron put his grant application through a different review panel.

Almost all the ME/CFS grants that get funded come through the SEP review panel -which is the one this blog refers to.

If we can get substantial numbers of good grants before this panel we can steadily increase funding.

An RFA is the only way to dramatically increase funding that I know of - so it appears to be the way to jumpstart this field. After the RFA is done, though, the SEP becomes critical because most all the grants will go through it. That is the ME/CFS researcher representation on the SEP is very good news.
What you wrote definitely makes sense, and I am tentatively hopeful about it....thanks for further clarifying.
 

Snow Leopard

Active Member
Why don't they take an active role in building research capacity and encouraging new people into the field as they have done previously for AIDS, cancer etc? (and in Australia, conditions like Diabetes, Asthma have been made "national priorities")
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Why don't they take an active role in building research capacity and encouraging new people into the field as they have done previously for AIDS, cancer etc? (and in Australia, conditions like Diabetes, Asthma have been made "national priorities")
That's what is wanted and needed and hopefully will happen. Vicky Whitemore at the NIH is certainly trying. We will hopefully know more soon.
 

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