About Us


25 Years – then and now

WISCONSIN Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Association, Inc

Ruby Nakamura, a Cardinal Stritch business professor, CFS sufferer, and social justice advocate, founded the Association in 1986. We incorporated as a 501(c)(3) in August of 1987. The original Board: President Ruby Nakamura, Vice President Genie Gengler, Secretary, Pat Fero and Jack Hale, Treasurer.

  • 1987 – 1990:  Helped other state groups incorporate, formed a fourteen state Federation, hosted the first CFS regional conference, and began quarterly publication of the Lifeline newsletter, trained state support group leaders.

  • 1990 – 1994:  Focused on Wisconsin networking and collaboration to build the state support group network and develop the Children and Family group, continued with materials development to include the first Physicians Handbook on CFS, sent representatives to Federal congressional hearings to testify and to lobby for CFS research funding.

  • 1994 – 1998:  Began state educational seminars, expanded support network to 27 groups statewide, expanded the Children and Family group with registry, gave presentations at Wisconsin Teacher’s Convention and School Psychologist’s Conference, distributed mass mailings to Wisconsin Internal Medicine MD’s and Special Education Directors.

  • 1998 – 2000:  Opened state office in Sun Prairie, created website, continued patient assistance with understanding of growing weakness in delivery of services, attended the Centers for Disease Control meeting about misappropriation of federal research funds (by invitation only, 22 participants).

  • 2000 – 2002:  Began reevaluation of our mission to assist patients, conducted analysis of public health care delivery system, state of the science of CFS/FM research, investigation of changing patterns of advocacy by specific groups such as the Arthritis Foundation, MS charities, Post Polio, Lyme, Lupus, and American Association for Autoimmune disorders etc., increased involvement in National and International forums for discussion of strategies to help patients.

  • 2002 – 2003:  Sent five patients to Washington DC to lobby for research funding, continued to work on the Association’s best strategies for patient assistance, identified two priority areas within Wisconsin - collaboration with medical and social service agencies and training for medical professionals, created PANDA Fatigue Consultation Clinic model with fundraising benchmarks, accepted bid to host 7th International AACFS conference, a 3-day research, and clinical and patient conference, initiated a significant community fundraising event (the construction and sale of a house and specified a completion date for this project- October 2004).

  • 2004:  Invited to present on Wisconsin projects at the March 22, 2004 HHS committee meeting of the Chronic Fatigue Syndrome Advisory Council (CFSAC), gave testimony at www.wicfs-me.org articles page, hosted International CFS conference in Madison – www.IACFS.org, Panda house under construction.

  • 2005:  Continued with PANDA project, held open house in May and sold donated house in August, placed proceeds of $65,000 in PANDA planning account, held first educational seminar in a series under PANDA projects with guest speaker, Dr. Lenny Jason, DePaul, Chicago, IL, continued with investigation of National Institutes of Health (NIH) project of understanding CFS research funding, started a memorial fund for the Casey Fero Blood and Tissue Bank - the first national repository for CFS specimens for scientific research.

  • 2006:  Reached first benchmark for start up of tissue bank, invited to fundraiser for the CFS research, clinical and educational facility that would house the bio-bank at the University of Nevada medical school, presented $11,700 to Institute for bio-bank freezer, invited to CFSAC for 45-minute presentation on NIH CFS funding patterns, hosted Fall 2006 Educational Seminar guest speaker, Dr. Lucinda Bateman, Salt Lake City, offering Continuing Ed. to Physician Assistants, and afternoon session for patients, set PANDA Planning Committee goals. 

  • 2007:  Continued formulating PANDA goals of educating the medical community by sponsoring one Madison MD for the IACFS conference in Ft. Lauderdale in January, (three board members attended), and Executive Director Pat Fero received the Female Advocate of the Year Award. Published interview nationally about the Wisconsin Association, which appeared online in April. www.Phoenixrising.com, invited to write US Myalgic Encephalomyelitis/ CFS advocacy and information news for ME London conference in May - www.investinme.org, will host Fall 2007 Educational Seminar - guest speaker, Pat Fennell of Albany Health Management, will present to mental health professionals for CE and to patient population at a second session on Oct 6.

  • 2008: Continued to collect donations for blood and tissue bank, now called the Bio bank repository. Attended and spoke at two meetings of the Chronic Fatigue Syndrome Advisory Council (CFSAC). Reworked our budget to fund 5 board members to go to the IACFS conference in Reno in 2009. Fall seminar and Annual meeting featured excerpts from the London Invest in ME conference and a PowerPoint presentation by Pat Fero on viruses 101. Membership voted to change the name of the association to the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association.

  • 2009: Sponsored 5 board members to attend the March IACFS conference held in Reno, Nevada. Presented donations totaling $5,000 to the Whittemore Peterson Institute Bio bank in memory of Casey Fero. Attended and spoke at the CFSAC Spring and fall meeting in Washington DC. Increased an ongoing and time consuming effort to help a family in NC whose child, sick with CFS, was put in a foster home and the parents charged with medical abuse. The Friedman Award, our first annual $3,000 medical scholarship, was presented at the October annual meeting to Jason Habeck, a second year medical student for his essay on ME/CFS.

  • 2010:  Added WI information to 211 network throughout the Midwest.  Opened membership partial waivers for out of state patients to increase information access because of new research developments.  Offered $3,000 Friedman medical scholarship. Featured Dr. Dane Cook at October Annual meeting.

  • 2011: Executive Director Pat Fero nominated by patients and accepted to serve as one of two patient representatives on the April State of the Knowledge  (SOK) NIH Workshop planning committee. In addition, Fero presented at the SOK: 3 Generations: A view from WisconsinEmphasis  - three generations into this illness and a 10-year profile of NIH CFS research  funding  shows that the NIH has spent about $3.64 per person per year for the last 10 years. May 2011, CFSAC meeting, Fero read testimony for Ben De Pasquale, a severely disabled young man from NY. The board voted to join the Coalition 4 ME/CFS and Coalition 4 FM, 2 national advocacy groups. In July 2011, the Board is moved to explore options    for increasing information access for patients.   In November, Fero attended the CFSAC meeting in Washington to report on further concerns about the use of CFS award money.

 

Wisconsin Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Association, Inc.
1223 W. Main Street #141, WI 53590      608 834 1001
www.wicfs-me.org                    

Never doubt that a small group of thoughtful committed citizens can change the world.
Indeed, it is the only thing that ever has.

-- Margaret Mead


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