This day recognizes a host of diseases that include Fibromyalgia (FM), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivity (MCS) and Gulf War Syndrome.
May 12 was chosen as the day to bring awareness to these chronic diseases on Florence Nightingale’s birthday, one of the most notable figures in history who was thought to have lived with ME/CFS. The importance of bringing awareness to these complex chronic diseases is that they’re often misunderstood. They are considered invisible diseases where there may not be any visible characteristics and people who live with these conditions can appear physically healthy but are leading debilitating lives.
BC Women’s has a specialized Complex Chronic Diseases Program (CCDP) that supports adults managing ME/CFS, FM, MCS and symptoms attributed to chronic Lyme disease. CCDP is a provincial program, the only one of its kind in Canada, providing holistic care for patients. This month marks the program’s fifth year anniversary, the program has evolved over the years with a growing inter-disciplinary team to better serve patients and a Community Advisory Committee to represent patient and community organizations. The Community Advisory Committee is made up of representatives from the National ME/FM Action Network, ME/FM Society of BC and Myalgic Encephalomyelitis Victoria. CCDP works in collaboration with the committee to gather patient feedback to improve the program, and enhance patient engagement and advocacy.
We’re excited to announce that CCDP was in attendance at the first Canadian Collaborative Team Conference for ME/CFS in Montreal on May 3-5. The conference was an opportunity for experts and the community to come together to knowledge-share and advance medical research in ME/CFS. A team from CCDP were invited to present at the conference sharing CCDP’s clinical approach, an overview of the program and the latest research from the program. It was a successful and informative conference and we look forward to participating in future events.
- They are invisible diseases that can lead to significant disability affecting all aspects of life including work, interpersonal relationships, mental health, personal responsibilities, etc.
- Growing population based on Canadian Community Health Survey 2016
- 522,000 FM
- 581,600 ME/CFS
- 1,008,400 MCS
*Survey respondents may have more than one of these diseases
*The number of Canadians managing these diseases is likely higher than indicated here, as many have not yet been given a diagnosis.
- There is currently no cure. Chronic complex diseases, as the name implies, are complex and it is only recently that a small specialized sect of the medical community that is starting to grasp on ways to provide care for patients.
- While these diseases mostly affect women, they are also prevalent among men and children.