Updated: Dec 8, 2018
Our small but dedicated team of volunteers and part-time staff work hard to realise our Society's mandate to educate, raise awareness, advocate for and provide support to the ME and FM community in BC. Following is what we are currently up to:
Maintaining a website with up-to-date information regarding the illnesses, including diagnostics, treatments, research, patient supports and resources, including a section dedicated to health care providers;
Providing printed information upon request to health practitioners, patients, care-givers, administrators, service providers, etc.;
Maintaining an online Patient Forum;
Publish 2-3 comprehensive newsletters per year, providing a digital version to our subscribers, and a printed version when requested;
Responding to information requests and provide support to anyone who calls in to our phone lines, or writes via email or social media with questions and concerns regarding the illnesses;
Through our Unmet Needs campaign, advocate to key decision-makers in the province to address the many and dire unmet needs of ME and FM patients and families;
Launched our provincial Unmet Needs advocacy campaign, targeting key decision-makers in government, health care regulation and education;
Developing an online interactive database of health care professionals throughout the province;
Hosting awareness-raising and or educational events. We provide live streaming and/or free access to video recordings of these events on our website for the benefit of patients, care-givers and healthcare professionals around BC;
Annual General Meeting: this year, for the first time, we opened up participation in the AGM via LiveStream in order to allow members who are house/bedbound, having a bad day, or living outside of Vancouver, to attend.
Foster volunteer participation and a sense of inclusion among members by developing accommodations which will allow the participation of ME and FM patients, as well as their carers and families, to the extent they are willing and able;
Actively participate on the Community Advisory Committee of the Complex Chronic Diseases Program in order to educate staff, healthcare practitioners, and patients regarding ME and FM, and the needs of the community province-wide. Our Society’s participation has had a significant impact on the program;
Collaborate with and participate in the UBC Patient and Community Partnership for Education;
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 like-minded organizations, such as Pain BC, at a provincial, national, and international level in order to educate, raise awareness among healthcare professionals, researchers, and government officials;
Participate in provincial and national patient-oriented research, at a strategic and funding application level;
Participate in the international #TimeforUnrest campaign, educating BC medical and health sciences students about ME;
Working on bringing the Unrest CME program for health care practitioners to Canada;
Attend ME related conferences and share information with community;
Patient engagement: encourage patient involvement in ME and other health related conferences and patient-involvement opportunities.
For a full update on the latest Society activities, please read our Fall 2018 Newsletter.