PHOENIX RISING

 A Guide To Chronic Fatigue Syndrome

Bringing Opportunity to ME/CFS/FM Patients

The Phoenix Rises From the Ashes of Its Former Existence

Rik Carlson - Rik Carlson founded the first state Vermont CFS group, the Vermont CFIDS Association (VT CFIDS Association. In 2003, after six years of work he published a blunt, articulate, darkly humorous biography "We’re Not in Kansas Anymore" that chronicled his (fascinating) life before and after CFS. In 2006 the VT CFIDS Associations efforts culminated in the Vermont legislature’s passing a bill with the object of providing an ME/CFS Manual to every physician in the state. (October 2007)

Pat Fero  -  Pat Fero is the leader of one of the oldest CFS Support/Advocacy groups in the U.S. - the Wisconsin Chronic Fatigue Syndrome Association (WCFSA). She was presented the PANDORA Female CFS Advocate of the Year at the 2007 IACFS Convention. (April 2007)

Dr. Ken Friedman- Dr. Ken Friedman is a researcher, advocate, author and father of a daughter with ME/CFS. From 2003 to 2006 he was a member of federal advisory committee on ME/CFS, the Chronic Fatigue Syndrome Advisory Committee (CFSAC).

Part I : the Federal  Response to Chronic Fatigue Syndrome - Dr.  Friedman' discusses his time on the federal advisory committee on CFS and  why the federal response to this disease is so meager (Sept 07)

Part II: Chronic Fatigue Syndrome Research - Roadblocks and Opportunities - Dr. Friedman examines why finding research funding has been so difficult (Sept 07)

Tom Hennessy - A dynamic in-your-face advocate Tom Hennessy cut a wide swath in the late 1980's and early 1990's as he demanded that the medical establishment respond to the needs of ME/CFS patients. Originator of International CFIDS Awareness Day and founder of RESCIND Tom's activities were curtailed were by worsening illness. In this interview he talks about the heady days of the past and the issues CFS patients confront today.

Dr. Leonard Jason  -  Dr. Jason lead the Pediatric definition group, produced the first complete economic costs estimate of ME/CFS and was instrumental in coming up with the correct prevalence estimates.  He is a board member of the IACFS/ME and a committee member of the Chronic Fatigue Syndrome Advisory Committee.  Here he addresses potential implications of the CDC's Empirical Definition of CFS. (August 2007)

Martha Kilcoyne - A CFS Patient Returns - Ten years after she came down with chronic fatigue syndrome (ME/CFS) and seven years after she recovered from it  Martha Kilcoyne returned to tell her story in "Defeat Chronic Fatigue Syndrome: You Don't Have to Live With It." Martha talks about how she beat ME/CFS and the techniques she and her husband pioneered, many of which are becoming standard practice amongst forward thinking doctors (March 08)

Marly Silverman - In a few years Marly Silverman has created one of the most dynamic CFS support/advocacy organizations P.A.N.D.O.R.A. in the U.S. (Jan 2007)

Dr. Suzanne Vernon - A leader of the innovative CDC ME/CFS research team for 11 years, Dr. Vernon became the CFIDS Association of America's first Scientific Director in November, 2007 (Dec 07).

Dorothy Wall  - Dorothy Wall, an ME/CFS patient, is the author of the book "Encounters With the Invisible : Unseen Illness, Controversy, and Chronic Fatigue Syndrome" (Nov. 2006)