A new Canadian initiative has been launched to reach out and educate our new MPs post-election. We hope you'll consider downloading the letter, sending it off to your MP and asking family and friends to do the same. Flooding their offices with our letters will raise awareness and help gain the political support necessary for funding, care and treatment to follow. The campaign and the site are fully bilingual. Thanks everyone! -------------------------------- To All ME Patients and Caregivers in Canada! Allies For ME is a new group working collaboratively to bring equity in research funding and access to appropriate medical care, treatment and support to the 580,000 Canadians living with Myalgic Encephalomyelitis (ME). Please help educate our new MPs and Cabinet about ME by clicking on the link below and downloading a letter that you can personalize and send to your new MP. Step-by-step instructions will help make it quick and easy for you. Website: Allies For ME
The beginning of the letter.... Re: Three Actions to Increase Awareness of Myalgic Encephalomyelitis Dear (Mr. Ms. Mrs.) (Last Name), I am writing as one of your constituents, to express my concerns as someone affected by the debilitating chronic illness Myalgic Encephalomyelitis (ME, formerly known by the stigmatizing name Chronic Fatigue Syndrome or ME/CFS) to ask for your assistance in helping Canadians like me raise awareness about this debilitating disease. What is ME? ME is a complex, multi-system disease classified by the World Health Organization (WHO) as a neuro-immune illness occurring in sporadic and epidemic forms, and it can affect anyone at any given time, including children. “The onset of ME is often sudden, typically following a viral or other type of infection but may occur following other types of physical trauma. In other cases, the disease may develop gradually, over a period of weeks or months. Patients describe feeling severe ‘flu-like’ symptoms chronically. In addition to the characteristic post-exertional malaise (PEM), patients may also experience cognitive impairment, unrefreshing sleep, autonomic manifestations, such as heart rate variability, and also experience muscle and joint pain and sound, light, and chemical sensitivity. Elevated antibody titers to viruses may be present, in addition to low levels of autoimmune serology. ME/CFS can present with a wide range of severity”. First, The Bad News…The Canadian Context of ME First, a bit of background on an illness that is still very much in the shadows in Canada. Based on the Statistics Canada 2016 Canadian Community Health Survey, this illness directly and severely impacts over half a million Canadians, as well as hundreds of thousands of their family members and loved ones. About 75% of individuals with ME are no longer able to work; 25% are house or bed bound. The severely ill require complete darkness, complete silence, complete isolation, a feeding tube and catheter. .....
THANK YOU, MILLIONS MISSING CANADA!!! The very thing I've been wanting! For those not on Facebook, is there another link?
We LOVE your enthusiam @DokaGirl. You've just made my day! Thank you! The link above link leads to the Allies For ME website where the letter and instructions are there waiting for you in English and in French. The campaign is also being promoted through social media and people can find it on the Millions Missing Canada FB and Twitter pages.
This is amazing! Will use it shortly. Thank you for having gone to the trouble of making it bilingual. It's a common problem, especially in my case having a BQ MP and working with the provincial government having to translate things myself is a chore. It's explicitly towards federal MPs but I will send it to provincial authorities as well.
Thank you @brf! And, excellent idea @rvallee to send to provincial politicians as well. And how about municipal mayors and councils.