New Shorter Version of Mom Needs To Lie Down

Dr. Eleanor Stein and I have worked together to create a shorter version of Mom Needs to Lie Down: The years and lives slept away by ME/CFS.

The purpose of this video is to summarize the illness and its symptoms for a more general use.

Stay tuned for updates on where else you might be able to see this video soon.

View this video on YouTube here.

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.

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

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