:A View From Wisconsin

Pat Fero, MEPDWisconsin ME & CFS Assn., Inc.

4/8/2011 NIH

Three Generation

s

Compassiona

te

Fair

Cooperative

Reasonable

Honest

??

OH NO! Not again

Katie

Who? Why?How Long?

Big Dude

Teeny Dudes

Ryan

Marla

Pat

Kat

Mike

Dissonance: The Pieces Don’t fit

OBIT

3 Generations

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.

The Squeeze10 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 dollars10 year funding = 36.4 million dollars, $3.64 per patient per year

Bottom Line: So – called “mysterious” disease remains

“mysterious”

The Squeeze continuesCFS 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.

Intramural 2009 – 2010 = 6 CFS related studies funded, 6 CFS specific, all 6 on pathogens, infectious agents.

Bottom lineNOW we have someone’s attention.

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

No one has any moneyBut, But, But

10 year NIH Budget Squeeze

• Research Projects:

• #32,184 = $9.8B

2000$17.1

• Research Projects

• #37,185 = $15.5B

2009$29.5

NIH Research Project Grants: New

Applications, Awards, and success rates

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:BiasIgnoranceLack of scientific interest

What do we think?obit

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.

LEAD

Think about the problem beyond todayContinue to read the scienceStop entrenched scientific medical biasGenerate accurate medical informationStrategize with researchersGo to the top

FollowThink about the problem beyond todayContinue to read the scienceStop entrenched scientific medical bias

Move AsideStop entrenched scientific medical bias

Thank you

Casey Ryan Fero

March 26, 1982 – July 4, 2005

Thank you1.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