CFSAC Testimony 2012

Fall 2012 Testimony CFSAC
Pat Fero 1408 Coral Drive Sun Prairie, Wi 53590

For almost 10 years, I have tracking NIH CFS funding patterns. What I will present today is evidence that patients are worse off in 2012 than in 1993.  I expect you to look at these graphs. I expect you to walk away with some history of NIH activity. My hope is to further your understanding of the need for fundamental change within the NIH.

1. General Accounting Office,(GAO) graph  This graph shows intramural and extramural funding as well as cooperative agreements. On pages 46 – 52 of the GAO report, investigators present a rationale for why some projects were excluded from CFS expenditures and why other projects should have been included.

Overall, the GAO concluded that the NIH was actively pursuing CFS research despite near flat line spending from 1996 though 1999. In addition, investigators state,  “Despite its varied efforts, the intramural program on CFS in NIAID is currently inactive. NIAID’s primary CFS investigator has recently moved elsewhere in the agency, and we were told that no one else has yet indicated an interest in developing work in this area.” (Pg. 22)

2. Line graph two  The blue line indicates NIH reported levels of CFS expenditures from 2000 through 2010. In 1999, GAO reports research funding close to 7 million dollars.  Within the next 11 years, funding spiraled downward to a low of 3.5 million dollars in 2008. From 2002 through 2008 with no intramural CFS expenditures, it appears that the CFS intramural program remained inactive.  The bounce in 2009 to over 6 million is due to intramural and extramural research on pathogens to include XMRV.    

The black line shows NIH levels of CFS expenditures once adjusted through FOIA data. I DID EVERYTHING HUMANLY POSSIBLE TO MEET THE STANDARDS OF THE GAO.  If CFS was not the primary focus of the grant, the GAO investigators did not include it in their report and I did not include it in this report either.

On May 30, 2002, the National Advisory Allergy and Infectious Disease Council (NAAIDC) voted to “not renew CFS research centers and to give the money that NIAID had set aside for their concept to the NIH ORWH which coordinates CFS research for the entire NIH…”  (5.30.02 NAAIDC meeting minutes) Note: Intramural funding for CFS stopped in 2002. Note: From 2002 through 2005, six renewed unrelated projects show as CFS expenditures.  (FOIA 32335 )  NOTE: 2002 – 2007 gap between reported and actual CFS.  I do not blame ORWH. 

3 Bar graph three Blue bars show NIH reported CFS spending. Red bars have a number inside showing the number of new grants funded. Again, look at 2002 through 2005.  The problem is arithmeticJ)), but illusive.

2010.  Under ME/CFS categorical spending, the NIH REPORTER excludes at least one CFS primary research grant -  $700,000 a year, 5 year, to a PI from Ohio State. This grant shows under the search terms “chronic fatigue syndrome.”  In 2010, an NIH FOIA officer said that the NIH Reporter is an accurate reporting of CFS spending. Is it?

4. NIH Activities    This chart is copied the GAO report page 56 and 57. The NIH reported a long list of ongoing Congressionally Requested CFS projects. What Happened?

There is a pattern in NIH CFS funding. Despite the development of extraordinary research techniques and technology, patients are on the curb.   We have no evidence from the NIH that we, the people, are being taken seriously. We MUST continue to promote fairness. We must continue to ask for fundamental change. I want all of us to look at the truth. Do not sugar coat this NIH “lack of interest” in CFS as poor grant writing, a systems error, misstatements, and lack of funds. I may be sick, but I am not stupid.  We need a strategic and fully funded 5 year plan. Don’t be selling me a bill of goods about planning “new action, if it does not cost anything.”   I am a human being. These sick adults, and our sick children will show you we matter.