May 12th International ME/CFS, FM, and MCS Awareness Day

We are working together to proclaim May 12th International Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Chemical Sensitivity Awareness Day. The National ME/FM Action Network and May 12th International Awareness Day are encouraging people to light up a private or public building in their town or city blue, purple, and/or green. By lighting up buildings around the world we are standing together to raise awareness and fight stigma for ME/CFS, FM, and MCS.

1.4 million Canadians suffer from these debilitating illnesses, yet many people around the world are unaware of their impact. We need Canadians (and people around the world) to write their MPs and MLAs asking them to proclaim May 12th an International Awareness Day in their area. An English example letter is provided here.

Here is a quick video inviting you to Light Up the Night. Do your part. Light up your front porch, city hall, or town bridge blue, purple, and/or green for May 12th International ME/CFS, FM, and MCS Awareness Day.

Mom Needs To Lie Down: The years and lives slept away by ME/CFS

Share the Bounty: Vote for the National ME/FM Action Network

Nature's Bounty is having a contest where you can vote for your five favourite charities to win $10,000. It's free and easy to register so please join and vote for the National ME/FM Action Network as one of your choices. Plus you get to check out all the other awesome charities across Canada that need our support.

Currently the National ME/FM Action Network is second-place in the Wellness category. So please register and vote to keep them at the top!

Vote here.

March 6th Screening

Thank you again to everyone who was able to attend the screening on March 6th of Mom Needs To Lie Down: The years and lives slept away by ME/CFS. So far I've gotten lots of positive response in the form of emails, YouTube comments, and even a blog post!

Here are some pictures from the screening at the Winnipeg Free Press News Cafe.

Winnipeg Free Press News Cafe

Larissa Peck, Joanne Kelly, and Danielle Da Silva

Meghan Franklin, Zach Samborski, and Megan Douglas

Panel discussion

From left to right: Taylor Cole, Dr.  Eleanor Stein (on the TV), Dr. Mindy Campbell, and Lorilee Leslie-Cole

Listening to Dr. Eleanor Stein via Skype

Useful reading material about living with ME/CFS

Taylor Cole with Denis and Marianne Litster

Thank you to everyone for the support and kind words. Although the screening and school portion of this project is over I am not finished. I will continue to use my video editing, media relations, and communications skills to help those who suffer from ME/CFS.

This blog will continue to be updated.

If you are interested in contributing please send me an email:
momneedstoliedown@gmail.com
taylesliecole@gmail.com

Mom Needs To Lie Down: The years and lives slept away by ME/CFS

The screening for Mom Needs To Lie Down last night was a success! Thank you to Dr. Mindy Campbell, Dr. Eleanor Stein, and Lorilee Leslie-Cole for being part of the panel. The discussion following the screening was captivating and enlightening. Big thank you to the Winnipeg Free Press News Cafe for letting me host my event there. The service and appetizers were divine.

More pictures to come soon!

Watch the video on YouTube here.

Trailer

Here is the short trailer for Mom Needs To Lie Down: The years and lives slept away by ME/CFS.

The whole video will be released next week after the screening on March 6 at the Winnipeg Free Press News Cafe.

Click here to watch the video on YouTube.

Click here to watch the video on Vimeo.

Buy tickets here.

I Thought I Was Alone and Then I Met Anne-Marie & Friends

Living with CFS is isolating. Living with CFS in Manitoba is particularly isolating. We simply do not have the population base to provide the extra resources and tests that this illness requires.   I am 57 and still have not made peace with this condition. I have navigated the Manitoba medical maze for over 25 years, often finding it very frustrating. I have found solace online. I receive tremendous comfort from the amazing international medical and scientific research now being conducted on our behalf.  The future looks promising.  Friends and family provide much needed financial and physical help and the help is always appreciated. I count my blessings every day. But remarks such as, “have you tried exercise”, “some of us have to work tomorrow,” “ continue to weigh me down. Participating in Taylor’s film is my official way of owning and accepting my limitations.

I met Anne-Marie when she attended my presentation to the Fibromyalgia Support Group, Spring 2013. I was reaching out to the Fibro group to find someone in Mb who may have shared my experience. For over 20 years FMSWinnipeg has provided much needed programs and services (highly recommend “Taking Charge”) but they have a bias towards physical activity. That is not going to work for us who have to keep our heart rates under 97.

So the universe provided. What a blessing to obtain CFS support at this point in my life. Anne-Marie coordinates Winnipeg’s first CFS support group. We meet every 6-8 weeks at a centrally located restaurant. No pressure, just emotional and educational support from a group of individuals who get it. Thank you Anne-Marie for your pioneering efforts in this area. You are a gift to all Manitobans suffering from this energy draining illness. Thank you Taylor for being our advocate. Thank you for starting this blog, because we don’t always have the energy.

-- Written by Bev Friesen in Winnipeg, MB