Search ‘chronic fatigue syndrome’ on the internet and you’ll see the CDC at the top of the list. No program has made more of a difference in how chronic fatigue syndrome is treated or viewed.
A General Accounting Office (GAO) in the late 1990’s found the CDC misappropriated almost 60% of the funds specified for ME/CFS into other research fields. The GAO investigation, the creation of the much disliked name, two problematic definitions, (Fukuda /Empirical) and a ‘Toolkit’ that provides few treatment options for doctors, has left the CDC program a lightning-rod for criticism from ME/CFS professionals and patients.
Perceived as something of a ‘rogue’ organization under Dr. Reeves with little interest in other research efforts, the programs new chief, Elizabeth Unger, brought a breath of fresh air in 2011 as she engaged ME/CFS researchers and physicians in several collaborative efforts.
Dr. Unger faces challenges rebuilding the programs relevance in the research field, redoing a Treatment ‘Toolkit’ which provides few treatment options for patients and doctors, and revitalizing a program that receives little internal support. The program, tasked with research into the causes and epidemiology of ME/CFS, treatment and physician education remains severely underfunded.
Articles and Blogs
- Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale (Nov 2011) – In a long article Journalist David Tuller digs deep into the CDC/CFS connection. Essential reading for anyone trying to understand the federal response to ME/CFS.
- CDC CFS Program Changing its Stripes, NIH Lags Behind in 2012 (March 2012) – A look ahead in 2012 finds the CDC making some welcome changes while the NIH stays stuck.
- The Treatment Showdown : CDC Toolkit vs IACFS/ME Treatment Primer (July, 2012) – the IACFS/ME Treatment provides the first competitor to the CDC’s Toolkt; section by section we compare the two.
- CDC ME/CFS Chief, Dr. William Reeves Passes: A Look Back (Aug 2012) – The leader of the program for many years, Dr. Reeves passed away in Aug, 2012..We take a look back.
- Who is CDC Research Chief Dr. Elizabeth Unger (Nov 2011) – Dr. Unger formally takes over the reins the CFS program; we ask who she is and what she’s done in the past.
- Dr. Reeves Out at the CDC (Jan 2010) – after, in an unexpected move, Dr. Reeves is suddenly removed from the program, we take a look at his legacy.
- Statement About Recent Publication From the CDC (Nov 2010) – The CFIDS Association of America takes the CDC to task for a personality disorders study
- The CDC’s Pharmcogenomics Studies (2006) – the CDC’s ME/CFS studies fill up a entire issue of the Pharmacogenomic’s Journal. In this multi-part series we look at each of them.
- ME/CFS Orgs Petition the CDC For Change (Jan, 2011) – ME/CFS organizations band together to request change at the CDC.
- Kim McCleary on the CDC’s Five-Year Plan (Sept 2009) – Kim McCleary of the CFIDS Association is not encouraged at the CDC’s Five Year Plan.
- Registering Dismay: the CDC’s Platinum Registry (June, 2009) – The CFIDS Association’s investigation of CDC finances and research suggests large amounts of waste exist. Phoenix Rising takes a look.
- “Research to Nowhere” (Oct 2008) – CFIDS Association President Kim McCleary exposes waste and mismanagement in the CDC’s ME/CFS program in her testimony to CFSAC
- CDC Misappropriation of Fund for CFS Research – a GAO investigation determines that almost 60% of the funds specified for ME/CFS research were redirected to other disorders.