What does the ME/FM Society of BC do?
We are a small but ambitious charity driven by ME and fibromyalgia patients and their families. Our primary goal is to address the health care crisis experienced by ME and fibromyalgia patients, the result of systemic stigma and ignorance of the diseases across government, the health care sector and the public.
This health care crisis means that ME and fibromyalgia patients have the highest unmet health care needs of any chronic disease patients in the country. In particular it means that there is a severe shortage of doctors and health care professionals who can help diagnosis and manage, let alone treat, either disease.
Through our phone line, email and social media, our Society regularly hears from patients who are left alone to deal with their illness and the devastation it wreaks on their lives. The situation is untenable for the estimated 130,000 British Columbians living with ME and fibromyalgia. What are desperate patients to do??
The good news: Our Society has been rolling out a multi-pronged plan to address this crisis in British Columbia:
Educating and supporting patients
As a provincial organisation with limited resources, representing a sick and disabled community, we have found that we can make best use of our strengths by focusing, sharing and supporting through our digital platforms and our phone line. ME and fibromyalgia patients are among the highest users of the internet and social media of all patient groups, and we work to keep our website up-to-date and informative, using social media and email to keep our community informed of ME, fibromyalgia and disability news and information, resources and research.
We also have in person events throughout the year, in particular in May and September. Our goal is to use Livestream technologies to make these events as widely available, accessible and inclusive as possible.
Our rack card campaign is ongoing. Patients around the province have been helping us distribute these to doctors’ offices, clinics and other health care centers. And for those who prefer to receive information by regular mail, we do send out hard copies of various publications and forms. Just contact our Program Administrator, Jasica Grewal, at email@example.com for more information.
Educating health care practitioners
#TimeFor Unrest in BC
In 2017 we joined #MEAction’s international #TimeForUnrest campaign and launched our own #TimeForUnrest in BC. The goal of this campaign has been to educate the current and next generation of medical and health care practitioners.
What we've been doing:
Hosting educational events for UBC medical students and health care professionals around the province and for other health care professionals
Partnering with UBC Med students on an ongoing ME FLEX project
Creating the position of UBC Med Students as ME Ambassadors for our Society - welcome Rachael Houlton (4th year), Perneet Sekhon (4th year) and Lauren Gingerich (2nd year).
Partnering with other organisations: We have partnered with ME Victoria Association, Pain BC , Disabilities Alliance BC, UVic Students with Disabilities, to host other educational events targeted at health care providers and students.
Educational Videos and CME Program
While in-person educational events are important, it is challenging to attract busy health care professionals to live educational events for illnesses with which they are not familiar.
Meeting this challenge, our next big goal is to create a continuing education program (CME) for British Columbia health care professionals which will give those who complete the program credits toward the professional development required to maintain their license. The program will be deliverable online and in person.
In 2018 our Board of Directors created the Unmet Needs Committee, later renamed the Advocacy Committee, to develop and implement a strategy for identifying and addressing the unmet needs of British Columbians living with ME and fibromyalgia.
The Advocacy Committee’s work has mostly focused on the BC Ministry of Health to develop an ME Health Strategy, which has been much like pushing a giant rock up a steep hill. Nonetheless, our efforts are making an impact, and following is what we have achieved to date:
Backgrounder for the Ministry of Health
We have presented our Backgrounder: The unmet health care needs of British Columbians living with MYALGIC ENCEPHALOMYELITIS (ME) to the BC Ministry of Health (MOH), along with our demands for a Provincial ME Health Strategy.
ME Clinical Practice Guidelines for British Columbia
BCGuidelines.ca is where the clinical practice guidelines and protocols published by the Guidelines and Protocols and Advisory Committee (GPAC) and their partners are made available to medical practitioners. GPAC is a joint committee between the Doctors of BC and the Ministry of Health.
Up until recently there were no guidelines available for ME in British Columbia. Our advocacy efforts with the BC MOH have led to temporary guidelines for ME - the Alberta guidelines: Identification and Symptom Management of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome - to be made available at BCGuidlines.ca. We have ensured that these guidelines come with a clear warning: “Please note that there is growing evidence that graded exercise therapy (GET) is not an effective treatment for ME/CFS and may cause harm to some patients. “
The GPAC with be working with the Complex Chronic Diseases Program and our Society on new guidelines for BC.
We are working on accelerating the implementation of billing codes, which will incentivise doctors to work with ME and fibromyalgia patients.
While meeting regularly with MOH, we have been connecting with other health professional organisations to help us address this health crisis. Our goal is to reach out to all the professional bodies and health authorities to educate them on ME and fibromyalgia, ensuring that they understand the specific and special needs of patients living with these illnesses.
In September we launched HealthFinder4ME, a website we developed and produced with senior software developer, Robert Thomas. The purpose of the website is to create a platform where patients throughout the province can share and search for information about knowledgeable or helpful health care professionals.
The number of listings on the site is growing. Please add any health practitioner you have found useful - in any discipline, conventional or complementary. You can also add your own review of any of the health care professionals already on the site, or add comments to any of the listings.
When we have worked out all the bugs we will open the site up Canada wide.
Needs Assessment Study
It has become clear that we need anME and fibromyalgia provincial needs assessment study to clearly identify the scope and details of the health care crisis our patient community faces. Our hope has been that the Ministry of Health will work on this or partner with us to work on this, however, the movement is slow with the ministry and our Society is forging ahead to seek funding for this study in partnership with the BC Women’s Complex Chronic Diseases Program.
We have ventured into partnering as a patient organisation in clinical research, with the goal of expanding research capacity for ME and fibromyalgia, ensuring the patient perspective is embedded in the research process, and maximising precious research dollars by focusing on studies which replicate valuable studies done elsewhere.
Help us continue our work
We are a small but growing organisation with a huge task list and ambitious goals. Your support is essential to keep our work going to help improve the lives of British Columbians living with ME and fibromyalgia.
Here’s how you can help:
If you have any questions, feedback or concerns, just send us an email: firstname.lastname@example.org