Our Society's ME & FM Education, Awareness-Raising and Support Program includes the following activities and services :
Update and maintain and our website with the latest and best information regarding the illnesses, including diagnostics, treatments, research, and patient supports.
Maintain an up-to-date resources list on our website and through our newsletter ,for patients, care-givers, and medical practitioners to find more information and supportive contacts for ME and FM.
Provide printed information upon request to health practitioners, patients, care-givers, administrators, service providers, etc.
Maintain a lively Facebook page and Twitter account which is linked to our website and digital newsletters on which we post the latest information regarding the illnesses.
Provide support and information through our phone lines and via email.
Publish a newsletter twice a year, providing digital and hardcopies to a subscribed list that anyone can join to receive information about the society, upcoming events, and the latest research about treatments, funding, campaigns, etc.
Host awareness-raising events. For our events we usually invite local or international experts to speak to our community. We provide free access to video recordings of these events on our website for the benefit of patients, care-givers and healthcare professionals around BC.
Participate on the Community Advisory Committee of the BC Women's Hospital's Complex Chronic Diseases Program in order to educate staff, healthcare practitioners, and patients regarding ME and FM, and the needs of the community and patients province-wide.
Collaborate with and participate in the UBC Patient and Community Partnership for Education. We are represented on the Patients In Education Committee.
Address community groups, employers, and other organizations who are looking for more information about the illnesses. We send speakers upon requests to present information to these groups.
Collaborate with other ME and FM organizations at a provincial, national, and international level in order to educate and raise awareness among healthcare professionals, researchers, and government officials.
Our current focus is on:
Developing our volunteer committees with clear mandates and procedures, and designed to allow even severely ill patients to participate in the workings of the Society.
Developing our online support forum, which can be accessed province-wide, and which will provide information, friendship and support for the over 100,000 patients in British Columbia with ME and FM.
Developing online support groups, catering to BC patients and families.
Participating in #TimeForUnrest, the global campaign to bring Jennifer Brea's highly acclaimed feature documentary Unrest to medical schools, leading research institutions, and advocacy communities around the world. Our Society is collaborating with UBC Medical students and others to bring the film to UBC medical schools at their various campuses throughout the province, as well as to other health sciences schools. We are also working to create Continuing Medical Education (CME) presentations for doctors and other health care practitioners.
Developing an online database of health care practitioners in British Columbia, to which patients can post recommendations.
Launching a Province-Wide Patient Outreach Campaign. Little money has been invested in research for ME and FM, few universities include information on the diseases in their medical or health sciences curricula, and misinformation abounds about both illnesses. The result? knowledge about ME and FM is extremely limited in the medical community, leaving patients waiting on average 5-7 years for a diagnosis, and often receiving harmful treatments. The aim of our Province-Wide Outreach Campaign is to have our flyers displayed in health-related offices throughout British Columbia. Through our flyers we can inform patients of key symptoms of the diseases, and direct them to our website for further information and support. Our goal is to arm patients with this information to help them be diagnosed and find support much sooner.
Supporting world-class research.
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