Welcome British Columbia

Members of the Legislative Assembly!

 

We invite British Columbia MLA's to connect with a constituent diagnosed with ME.

 

 

A little about ME

 

There are 77,000 British Columbians living with Myalgic Encephalomyelitis (ME), a chronic neuro-inflammatory spectrum disease impacting multiple systems in the body. 

 

On average, patients with ME have a lower quality of life and can be more disabled than patients with diabetes, colon cancer, multiple sclerosis, or chronic renal failure. One in four ME patients is house bound or confined to bed. There are fluctuations in the disease, meaning that any one snapshot or office visit may not be representative.

 

Not enough research funding

A lack of research funding has prevented the identification of a cause or biomarker for the disease at this time. Since the Institute of Medicine’s 2015 report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining and Illness, interest in and funding for ME research has slowly grown but is still far from equitable when compared with research funding for other comparably disabling diseases.

 

The Canadian Institutes of Health Research last year announced $1.4 million in funding to be invested over five years in a new national network which will be a catalyst for critically needed research opportunities leading to treatment and a cure. While this announcement was welcomed by the ME community, we are aware that much more needs to be invested in research for such a disabling condition which impacts over half a million Canadians. Research is needed in epidemiological, economic and social impact studies of this disease. Using patient- oriented methods, our Society has initiated two brain imaging pilot studies  and  a provincial needs assessment. ME research needs equitable funding in order to  provide answers to conclusively  benefit patients and their caregivers.

 

COVID-19 & ME

Currently, ME is receiving considerable attention  in the news with the emerging understanding about the potential  connection  with Covid-19 long- haulers. The concern is that COVID-19 will create a surge of ME cases.   

My MLA & ME 

My MLA & ME outreach program is a province wide initiative. The ME⏐FM Society of BC is providing all 87 MLA's with an opportunity to connect with constituents living with ME in order to  share their personal story,  become the MLA's  “go-to” person for anything related to ME, and help with a better understanding of the disease and its issues.  We will provide you with the name and contact information of an ME constituent, and will share that information with your office in the coming months.

 

Connect with us

We hope that you as an MLA will take this opportunity to connect with a constituent in your riding who lives with ME. Hearing their story will allow for a more informed discussion of the impacts of the disease and better prepare you for future debate.

 

Thank you for your time and attention for this very important outreach program.

Hear from your 
ME constituents!
Let your ME constituents hear from you

We ask you to

Leave No One Behind!

What is ME?

Myalgic Encephalomyelitis (ME) is a complex, chronic neuroinflammatory illness, which impacts systems throughout the body. There are an estimated 77,000 British Columbians living with the disease, and almost 600,000 Canadian.
 

A debilitating chronic illness, ME can strike suddenly or slowly creep up on adults and children, male and female, often lingering for years.  It leave 75% of its victims unable to work or take care of themselves or their families. It renders 25% housebound or bedbound.  Relentless and relapsing, ME has a devastating impact on the lives of affected individuals. 

You can read more on ME here.

We also have a very comprehensive ME  FAQ section.

Insult heaped on injury

ME patients are among the most severely disabled in our community. As a mostly invisible disease without a biomarker (yet), ME has suffered a history of gaslighting and stigmatizing which has resulted in a medical system shockingly ignorant about a disease more prevalent than multiple sclerosis, Parkinson's Disease and HIV/AIDS combined.

 

Despite the suffering inflicted by this devastating illness, insult is added to injury by a health care system which stigmatizes the disease leaving patients to navigate on their own through the brain fog, pain and many other symptoms brought on by the disease, trying to find answers, treatments, accommodations, home care and financial support.

For a fuller picture of the dire unmet needs of British Columbians living with ME, please read our 

 

Will COVID-19 lead to more ME cases?

The media talks about deaths and recoveries from COVID-19, but the reality is that many viruses leave behind a significant number of patients who never recover, many who have gone on to develop ME. The fast-spreading COVID-19 is not expected to prove an exception. In fact, the NIH is showing a keen interest in those who don't recover. This epidemic is providing a unique opportunity for ME Research.   

 

You can make a difference!

1. 

2

Watch personal video messages from British Columbians living with ME.

3.

Share a message with our ME Community and pledge your support for ME health equality. We'd love to hear from you!

 

Hear our voices:

Messages for British Columbia MLAs from constituents living with ME, their carers and families

 

Receive an email notification

when your 

ME constituents submit a video message. 

See ME

Photos and messages from your constituents living with ME

 

Your messages to your ME constituents

Messages from British Columbia MLAs to the ME community

Questions?

If you have any questions about our campaign, our website, our Society or ME, please contact us: info@mefm.bc.ca

Mailing Address

PO BOX 46879 STN D

Vancouver, BC   V6J 5M4

Call

T: 604-878-7707 or
BC Toll-free: 1-888-353-6322

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COPYRIGHT © 2016 MYALGIC ENCEPHALOMYELITIS & FIBROMYALGIA SOCIETY OF BRITISH COLUMBIA