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

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