: A View F rom Wisconsin

1. Pat Fero, MEPDWisconsin ME & CFS Assn., Inc. 4/8/2011 NIH :A ViewFrom Wisconsin Three Generations

3. OHNO!Notagain Who?Why? HowLong? Teeny Dudes Marla ?? Kat Big Dude Pat Katie Ryan Mike

4. Dissonance: The Pieces Don’t fit OBIT

5. 3 Generations

7. MONEY The CFS Special Emphasis Panel, created in the early 1990s, was designed to improve the chances of CFS grants being funded. Fiscal years 1988 through 1999, the funding rate for CFS was about 24% versus 28% for all grants across the same institutes that fund CFS research. (GAO 2000) The GAO counted awards where “CFS is the primary focus.” In 2006, 2007, 2008, the CFS SEP reviewed 161 grants. The funding rate for CFS awards was about 7%. The funding rate for non-CFS awards was 11%. Bottom Line: The CFS SEP no longer facilitates funding for CFS research.

8. The Squeeze 10 year profile (2000 – 2009) NIH extramural grants 24 new CFS awards = 7.6 million dollars 3 CFS research centers closed by 2002. Renewed funding declined from about 20 grants in 2000 - 2002 to 8 grants in 2009. T = 28.7 million dollars 10 year funding = 36.4 million dollars, $3.64 per patient per year Bottom Line: So – called “mysterious” disease remains “mysterious”

9. The Squeeze continues CFS Intramural Funding 1987 – 2002: 97 CFS related studies 51 CFS specific 2003 – 2008: 0 CFS related studies Bottom Line Between 2000 and 2002, a change in NIH policy led to a steep decrease in extramural funding and zero intramural interest within the NIH.

10. Intramural 2009 – 2010 = 6 CFS related studies funded, 6 CFS specific, all 6 on pathogens, infectious agents. Bottom line NOW we have someone’s attention.

11. Studies designated as CFS may not have CFS as a primary focus. Reported spending and actual spending on CFS are not the same. 2000 - 2009 OBM reports CFS expense at $60 million dollars. PI’s state that CFS is a priority, but grant history and research publications do not show use of funds for anything CFS related. Accountability is questionable. 2000 - 2009 actual CFS expense is $36.4 million Bottom Line $3.64 per patient per year

12. No one has any money But, But, But

13. 10 year NIH Budget Squeeze

14. NIH Research Project Grants: New Applications, Awards, and success rates

15. 7% funding rate for CFS applications $3.64 NIH expenditure per person, per year for the last 10 years (based on lowest prevalence rates excluding children) This Communicates: Bias Ignorance Lack of scientific interest

16. What do we think? obit

17. Some people believe: Chronic Fatigue = chronic fatigue syndrome = A boy named Sue? Count your blessings, you whiner! Patients are Hostile and their own worst enemy.

18. LEAD Think about the problem beyond today Continue to read the science Stop entrenched scientific medical bias Generate accurate medical information Strategize with researchers Go to the top

19. Follow Think about the problem beyond today Continue to read the science Stop entrenched scientific medical bias

20. Move Aside Stop entrenched scientific medical bias Thank you

21. Casey Ryan Fero March 26, 1982 – July 4, 2005

22. Thank you 1.The Economic impact of ME/CFS: Individual and societal costs Dynamic Medicine 2008, 7:6 doi: 10.1186/1476 -5918-7-6 Leonard A Jason, Mary C Benton, Lisa Valentine, Abra Johnson and Susan Torres-Harding Email: Leonard A Jason –ljason@depaul.edu; 2. The General Accounting Office Report, Chronic Fatigue Syndrome: CDC and NIH Activities are Diverse but Agency Coordination is Limited, (GAO/HEHS-00-98) 3. National Institutes of Health Freedom of Information Act Requests, 2000 – 2009 #32335, 33228, 34681, 34777, 34979, 35899 4. < http://report.nih.gov> 5. Meeting minutes 2003 – 2009 http://www.hhs.gov/advcomcfs/meetings/index.html 6. http://projectreporter.nih.gov/project_info_description.cfm