Thursday, February 27, 2014


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.

Thursday, February 20, 2014

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

Wednesday, February 12, 2014

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

Monday, February 10, 2014


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:

Tickets can be purchased through Eventbrite at the following link:

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