The Society’s Goals and Plans for 2017-2018
Our main goal for the next year is to prepare the foundations to grow our programs in order to better serve the ME and FM communities throughout the province.
Our purpose is to EDUCATE, RAISE AWARENESS, and provide SUPPORT.
The need is great in our ME and FM communities.
There is a severe shortage of knowledgeable doctors and health care professionals. This in turn leads to patients waiting years to receive a proper diagnosis. The lack of a diagnosis makes it difficult to receive disability benefits. There is very little access to care, treatment and management tools. And the lack of education and awareness of these illnesses has resulted in patients being confronted by stigma at all levels of the health care system, and even within their personal communities.
Our primary goals are to:
- Educate patients and their care-givers about Myalgic Encephalomyelitis (ME) and Fibromyalgia (FM).
- Inform ME and FM patients in BC of services, research, treatments, illness management tools, and support groups available in their local areas and across BC, using as wide of range of communication tools as available, in order to target patients suffering at all levels of the illness, including the home-bound and bed-bound, and those with and without access to digital media.
- Maintain a supportive online community of patients and care-givers who can share knowledge and resources regarding ME and FM regardless of their level of disability.
- Educate and raise awareness in the medical community with respect to ME and FM and the needs of patients in BC.
- Educate and raise awareness of ME and FM in the general community and of the challenges faced by patients.
- Educate and raise awareness of ME and FM in government with the goal of increasing funding for health and support services for patients in BC.
- Collaborate with other ME and FM organizations in campaigns to educate and support patients and raise awareness.
ME & FM Education Awareness-Raising and Support (EARS) Program
The EARS Program provides the following activities and services to the ME & FM patient community, their families and care-givers, health care practitioners and providers, and the general community:
- Maintain a website with up to date 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 two awareness-raising events per year. For our May Awareness event, we invite an internationally-renowned expert to come and 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. For our September event, we host a smaller awareness-raising event at which we present a speaker or a film at which patients, care-givers, and health practitioners are invited to attend. Reports of this event are written out and shared via our newsletters and online media.
- 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 province-wide.
- 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 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.
This coming year we are focusing our attention on four projects:
- Establishing a system of volunteer committees with clear mandates and procedures, and designed to allow even severely ill patients to participate in the workings of the Society.
- Creating an online support group which can be accessed province wide, and which will provide information, friendship and support for the 100,000 patients in British Columbia with ME and FM.
- 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 will collaborate 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.
- 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 educate and raise awareness of the illnesses among patients. Our goal is that, armed with this information, patients can be diagnosed and find support much sooner. We will create easy-to-understand information on ME, FM and our Society. The flyers will inform patients of key symptoms and direct them to our website for further information and support.
Our goal is to have our flyers displayed in as many health-related offices in British Columbia as possible.
We need your support.
To date, our programs have been sustained through the support of society membership fees, donations, and volunteer hours. We hope you will continue to support us in providing these programs and services for patients and families dealing with ME and/or FM.
Click here to make a donation to support these programs.