RFA Ticker, 2/8/16

ticker

  • Total RFAs Issued by NIH: 131 (October 2015 to date)
  • Total Dollars Committed to RFAs: $1,545,000,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
2/1/16 8 $26,000,000 Zero
1/25/16 6 $11,550,000 Zero
1/18/16 2 $4,500,000 Zero
1/11/16 10 $71,200,000 Zero
1/4/16 0 $0 Zero
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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RFA Ticker, 2/1/16

tickerWhy do I keep updating this RFA (Request for Applications) tracker every Monday? Because an RFA comes with set aside funds to stimulate research in a particular area. The last ME/CFS RFA was issued in 2006. Over the last ten years, NIH has repeatedly said no to the CFS Advisory Committee’s recommendations for RFAs. The reasons have varied over those ten years, but the answer remains the same. On January 19, 2016, NIH responded to the most recent CFSAC recommendation by saying:

NIH agrees that innovative biomedical research on ME/CFS is urgently needed and encourages investigators to submit grant applications focused on new approaches to study the disease. This can be done immediately without specific RFAs for ME/CFS and grants will be reviewed and funded according to their scientific merit and potential impact on the field. (emphasis added)

In other words, no RFA will be coming any time soon. NIH claims it doesn’t issue RFAs very often, and that it has no budget for specific diseases. This is not entirely accurate, as the numbers in this RFA Ticker reveal. So until NIH issues the RFAs that the ME/CFS field so desperately needs, and which the federal advisory committee has recommended for ten years, I will keep tracking the RFAs that NIH issues for other disease areas and research foci.

  • Total RFAs Issued by NIH: 123 (October 2015 to date)
  • Total Dollars Committed to RFAs: $1,519,000,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
1/25/16 6 $11,550,000 Zero
1/18/16 2 $4,500,000 Zero
1/11/16 10 $71,200,000 Zero
1/4/16 0 $0 Zero
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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NIH: Who Reviewed Grants in 2015

behind-the-curtainIn order to get NIH funding, a researcher has to succeed in several levels of application review. A persistent controversy in the field of ME/CFS is the allegation that grant applications are not reviewed by ME/CFS experts. So let’s take a peek behind the curtain and find out who is reviewing ME/CFS applications.

The vast majority of ME/CFS grants are assigned to the ME/CFS Special Emphasis Panel for review and scoring. The Panel is not a standing study section with the same members over multiple meetings. For each meeting (there are two or three per year), NIH invites a different group of reviewers based on the expertise needed for the current applications. So if there is a virology application, NIH would include a virologist on the panel.

But it does not automatically mean that the invited reviewers know much about ME/CFS. In 2014, Dr. Ian Lipkin said that a grant reviewer had given him terrible scores because CFS is “psychosomatic.” And if these are the types of scientists scoring ME/CFS grants, then it should be no surprise that researchers have trouble getting funding.

As part of a larger project, I obtained the rosters for the two grant review meetings of the ME/CFS Special Emphasis Panel in 2015. I’ve linked to the PubMed results for each researcher so you can see the studies they’ve published, but I’ve also tried to characterize their expertise relevant to ME/CFS. Here is the combined list:

  • Maria-Eugenia Ariza, The Ohio State University (Epstein-Barr virus and herpes viruses), December 2, 2015
  • James Baraniuk, Georgetown University (ME/CFS and Gulf War Illness expertise), December 2, 2015
  • Italo Biaggioni, Vanderbilt University (POTS and ME/CFS expertise), December 2, 2015
  • Maureen Hanson, Cornell University (ME/CFS expertise), December 2, 2015
  • Ben Katz, Northwestern University, (ME/CFS expertise), April 14, 2015
  • Anthony Komaroff, Harvard University, (ME/CFS expertise), April 14, 2015
  • Alan Light, University of Utah, (ME/CFS expertise), April 14 and December 2, 2015
  • Roland Staud, University of Florida, (CFS and FM expertise), April 14 and December 2, 2015
  • Peter Medveczky, University of South Florida, (herpes virus expertise), April 14, 2015
  • Marshall Williams, The Ohio State University, (Epstein-Barr virus), April 14, 2015
  • Jarred Younger, University of Alabama, (chronic pain and ME/CFS), April 14 and December 2, 2015

Of these eleven reviewers, eight can be fairly described as having ME/CFS expertise, even if it is not the focus of all their research. The three remaining reviewers are experts in human herpes viruses, something that is very relevant to ME/CFS.

If you look at the rosters by each meeting, then the April 14, 2015 review meeting was 70% ME/CFS experts (five of seven). The December 2, 2015 meeting was 85% ME/CFS experts (six of seven). That’s encouraging.

However, it is important to note that this is a list for just two review meetings. And not every single ME/CFS application goes to the Special Emphasis Panel. If Dr. Lipkin’s 2014 application went to a different study section, then the makeup of the SEP has no bearing on the prejudicial scoring he received. And it is also important to note that just because 2015 was a good year, that does not mean it has always been that way.

The makeup of the ME/CFS Special Emphasis Panel is just one piece of the NIH funding puzzle. The grant applications being submitted and accepted for review, their reviewer assignments, and the competition with other grants going to the Institutes – all of these factors contribute to the extremely low funding we see year after year. That’s why I believe a Request for Applications with set aside funds is critical to reversing the trend of dismal funding.

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RFA Ticker, 1/25/16

ticker

  • Total RFAs Issued by NIH: 117 (October 2015 to date)
  • Total Dollars Committed to RFAs: $1,507,450,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
1/18/16 2 $4,500,000 Zero
1/11/16 10 $71,200,000 Zero
1/4/16 0 $0 Zero
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 3 Comments

Grief: Too Many Words

Mom's Dayton portraitWhen my mother died, I could not sculpt words around my grief. Even several months later, I still could not express how grief felt to me.

Now, a year later, I find I have too many words to shape and press around the edges of my grief. I can’t choose the right words that will show you the boundaries of my emotions as a picture. I try to paint with words, but I cannot choose the right ones for this task. There are too many, and the space of grief is too large.

So instead, I offer this excerpt from one of my favorite books, To Bless The Space Between Us by John O’Donohue. His poem, For Grief, expresses my feelings better than I can myself:

When you lose someone you love,
Your life becomes strange.
The ground beneath you gets fragile,
Your thoughts make your eyes unsure;
And some dead echo drags your voice down
Where words have no confidence.

Your heart has grown heavy with loss;
And though this loss has wounded others too,
No one knows what has been taken from you
When the silence of absence deepens.

. . .

It becomes hard to trust yourself.
All you can depend on now is that
Sorrow will remain faithful to itself.
More than you, it knows its way
And will find the right time
To pull and pull the rope of grief
Until that coiled hill of tears
Has reduced to its last drop.

Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
To wean your eyes
From that gap in the air
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.

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NIH RFA Ticker, 1/18/16

ticker

  • Total RFAs Issued by NIH: 115 (October 2015 to date)
  • Total Dollars Committed to RFAs: $1,502,950,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
1/11/16 10 $71,200,000 Zero
1/4/16 0 $0 Zero
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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Long Term Disability Insurance/ERISA

If you are fortunate, then your employer provides you with disability insurance. When you become disabled, this insurance pays you a percentage of your salary, and you are not solely dependent on Social Security Disability.

In real life, it is never that simple because insurance companies try to avoid paying out too much in benefits, especially for severely disabling, chronic diseases with no treatment such as ME/CFS. There is a very complicated world of government regulations and case law that govern these policies and are supposed to keep things “fair.”

The Department of Labor has now proposed new regulations that will strengthen protections for disabled workers, and require the insurance companies to play more fair. The public comment period closes on January 19th, and you can be certain that the insurance companies are opposing these changes.

I’ve been too sick, and we’ve had several new family crises this month, so I have not been able to do much work on this. However, Jeannette Burmeister has done a fantastic job explaining the proposed changes and making suggestions for public comment over on her blog. I highly recommend you check out her three excellent posts on the subject, and then consider submitting a comment yourself:

Summary of Proposed Regulations

Sample Public Comment

Additional Guidance on Commenting

 

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Survey: Barriers to NIH Funding

Reprinted with permission of Lily Chu:

Over the years, IACFS/ME Board members have heard anecdotally from researchers, clinicians, and others that obtaining government-sponsored funding for research related to ME/CFS can be quite challenging, in some cases more challenging than that for other fields or medical conditions. Reasons that have been brought up include poor funding overall for the field, grant reviewers’ lack of familiarity with the condition, and lack of funding programs/ initiatives specifically targeting ME/CFS.

Proposed and planned actions might not be successful if they do not address existing barriers. Thus, we are polling the ME/CFS community this and next month regarding their views and experiences with regard to applying for government-sponsored funding. We also want to hear any ideas you may have for governments to stimulate or support research.

The poll is short (12 items total), anonymous, and open to anyone. We encourage non-IACFS/ME members as well as the international community to participate. Even if you are not involved in conducting research, we want to hear from you although some survey items might not apply to you. We hope to share poll results both in a future edition of this Newsletter as well as with US federal agencies and officials. Your participation in the poll can inform and influence future science policy so click on the link below to go to the poll and feel free to share the link with as many people as you wish. Thanks for participating!

Click to participate: https://www.surveymonkey.com/r/ZLWB838

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NIH RFA Ticker, 1/11/16

ticker

  • Total RFAs Issued by NIH: 103 (October 2015 to date)
  • Total Dollars Committed to RFAs: $1,431,750,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
1/4/16 0 $0 Zero
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 3 Comments

NIH RFA Ticker, 1/4/16

ticker

  • Total RFAs Issued by NIH: 103 (October 2015 to date)
  • Total Dollars Committed to RFAs: $1,431,750,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 5 Comments