Here’s a new way to be a ME/CFS activist and go beyond raising awareness. The ME/CFS Worldwide Patient Alliance is
“a group of ME/CFS patient advocates who think now is the time for a change. We hope to create this change through an effective, cutting-edge advertisement campaign, specifically to address what needs to be done to improve the quality of life of individuals with CFS, also known as Myalgic Encephalomyelitis (ME). This will be the patients’ voice. It will be our message.”
“”Our campaign aims to highlight the need for more biomedical research, increased public awareness, superior education for physicians and other health professionals involved in our care, and the need for a new name, one that shows the true severity of the illness and not just a single symptom, present in a multitude of other illnesses.”
With support from individuals and organisations such as
- Phoenix Rising
- P.A.N.D.O.R.A. Inc.
- Rocky Mountain CFS/ME and FM Association
- Vermont CFIDS Association, Inc.
- Wisconsin ME/CFS Association, Inc.
- CFS Solutions of West Michigan
One of their first actions has been to place a ME/CFS advertisement in the Washington Post
“Time for the US and UK governments to take the following actions:
- Provide more funding for biomedical ME/CFS research;
- Develop a national research and clinical network, as recommended by the federal Chronic Fatigue Syndrome Advisory Committee;
- Provide funding for XMRV/MLV clinical research in order to sustain momentum;
- Protect the blood supply and explicitly prevent ME/CFS patients from donating blood;
- Adopt the Canadian Consensus Criteria for diagnosis and research of ME/CFS;
- Bring the Centers for Disease Control website in line with the recommendations of leading researchers and practicing physicians in the field of ME/CFS.