Article on ME/CFS in the Washington Post

It seems that finally ME/CFS is getting more and more mainstream coverage. Below is a link to the Washington Post article by Julie Rehmeyer. It was published in the Health & Science section of the website on October 6. The author, Julie, was diagnosed with ME/CFS over eight years ago and still struggles with the lack of knowledge, support, and research that plagues this illness. 

After reading this well-written, honest article, my eyes scanned to what is commonly the most disappointing part of an online posting (the comment section). The article eloquently points out some of the common misconceptions about the disease and why doctors and scientists have a hard time agreeing on a common definition, so it's easy to understand how the general public is especially mystified by this illness. However, the comments I read at the bottom were mind-blowing-ly ignorant. It's hard to believe that after reading Julie's article where she paraphrases an ME/CFS specialist who also works with HIV/AIDS patients as saying, "that if she had to choose between having HIV and having CFS, she’d unquestionably choose HIV."  There are approximately the same number of Americans (one million) living with HIV as there are Americans living with ME/CFS, yet HIV/AIDS gets three billion dollars for funding and research and ME/CFS only gets five million dollars. This disparity is due to lack of knowledge, specialists, and researchers in the field.


Please read this article for yourself and feel free to link to other well-written articles on the topic that you've come across.

Winnipeg ME/CFS Support Group

As the months go by since the release of "Mom Needs To Lie Down: The years and lives slept away by ME/CFS" I've realized that many Winnipeggers with ME/CFS have virtually no resources to help them find a local support group. I've been contacted multiple times through this blog by people who are suffering from ME/CFS in Winnipeg and who feel alone.

Luckily, this blog allows me to help direct them toward the support group that is featured in the "Mom Needs To Lie Down" video. As Dr. Stein said in the video, support groups can be very helpful for people with ME/CFS so they don't feel as alone, scared, or unsure. Many people with this illness have had to seek out their own diagnosis and support groups are a great way to share that information. If you are in the Winnipeg area and need support please contact me through my email: momneedstoliedown@gmail.com.

I will connect you with the support group so you can be connected with the local ME/CFS community. The support group meetings are very flexible and relaxed and many of the women in the group correspond via email in between meetings. In the upcoming months I will be working on a new PSA type of video that will be played in medical clinics in Alberta. It will produced using footage from the "Mom Needs To Lie Down" video.

In the meantime, I plan to convert this blog into a landing page for Winnipeggers and Manitobans suffering from ME/CFS. If anyone would be interested in contributing their story to this blog, please contact me. Don't worry about format or if you are a good writer, I can help edit! The posts on this blog have already helped many local people with ME/CFS and more stories will help others who are just beginning their journey with ME/CFS.

Winnipeg ME/CFS support group meeting at McNally Robinson

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

Five Tips to Cope with ME/CFS

Those of us living with ME/CFS experience a wide range of symptoms beginning with the onset of the illness; it can progress gradually over months or years, or it can become apparent after a flu like illness or infection. Debilitating fatigue is only one of several symptoms required for diagnosis.

Our symptoms spread over a continuum resulting in a range of disability, from the inability to pursue social or athletic interests and activities while maintaining the minimum obligations of parenting and/or work, to being completely bedridden.

As there is currently no proven cause or cure for ME/CFS, and consequently, little interest or support from most of the medical community (especially in Manitoba), we are, for the most part, obliged to educate ourselves regarding our illness, treatment of symptoms, and strategies to facilitate any amount of recovery that may be possible.

There is hope. Nationally and globally researchers continue to zero in on possible causes and treatments. There is a wealth of information available in print and online to help us navigate our journey with ME/CFS. The links on this Mom Needs To Lie Down blog are very helpful places to start.

Here are 5 tips from my 6 years of living with ME/CFS:

1. Nurture your spiritual strength, in whatever way is meaningful to you.  
Listening to music, connecting with nature, talking with supportive friends and relatives, doing gentle yoga, meditation.

2. Find simple moments of joy every day. 
Hug your dog, savour the sunshine coming in the window on a cold, Manitoba winter morning, enjoy a favourite movie or TV show.

3. Less is more. 
It's a big learning curve, especially in the early days, to realize and accept that no matter how much we want to continue to pursue all of our favourite activities and goals, if we don't reduce and pace activity, we pay the price by crashing on the couch.

4. Reach out. 
There will be some really tough times. Call a trusted friend, relative, help-line or see a counsellor.

5. There are better days ahead.
With time, knowledge, acceptance and the discovery of successful strategies to lessen symptoms and couch time as much as is possible, the days become easier and life realigns with greater peacefulness.

--written by Lorilee Leslie-Cole in Winnipeg MB

Screening

Tickets are now available for the screening and panel discussion of Mom Needs To Lie Down: The years and lives slept away by ME/CFS.

The screening will be at 6PM on Thursday March 6th. Feel free to contact me through my blog or email: momneedstoliedown@gmail.com

Tickets can be purchased through Eventbrite at the following link:
https://www.eventbrite.ca/e/mom-needs-to-lie-down-screening-tickets-10521729777

Purchase your tickets soon as only a limited number are available.

Mom Needs To Lie Down

I have filmed and produced a short informational video that discusses what life is like for Manitobans suffering from Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). The video features interviews with two Manitoban women who have ME/CFS and Dr. Eleanor Stein, a ME/CFS specialist in Calgary who also has ME/CFS.

On March 6th I am holding a screening for my informational video Mom Needs To Lie Down: The years and lives slept away by ME/CFS.  It will be held in the evening at the Winnipeg Free Press Cafe and will be followed by a panel discussion.

This blog will be used as a forum for Manitobans with ME/CFS. Please contact me if you would like to submit a blog post about living with ME/CFS.