87 posts in the category “Chronic Fatigue Syndrome/ME”

Turning blue for Myalgic Encephalomyelitis Awareness

Posted May 12th, 2014 by

Did you know that today is International Awareness Day for Chronic Immunological and Neurological Diseases (CINDs)? CINDs include fibromyalgia, Gulf War Syndrome, Multiple Chemical Sensitivities, Lyme disease and Myalgic Encephalomyelitis (also know as Chronic Fatigue Syndrome or ME/CFS).

ME/CFS is tough to diagnose because there are no tests for it, and other conditions can cause very similar symptoms. Plus, no one knows exactly what causes ME/CFS, and although it is most common in women in their 40s and 50s, it can occur in both genders at any age.1

So why blue? May12.org is encouraging all advocates to turn a part of their body blue for ME/CFS awareness – you can dye your hair (or wear a wig), paint your nails and even Photoshop yourself. Or, just wear a blue t-shirt 🙂 Check out their Facebook page and their website for more information on ME/CFS awareness, and don’t forget to submit your blue photos!

If you’re looking for more resources on ME/CFS, PatientsLikeMe member Jen has been working on a film called “Canary in a Coal Mine,” that we shared about on the blog back in October. The film is currently in production after a successful Kickstarter campaign, but you can still check out the official website and the video below to learn how you can help change the face of ME/CFS.

 

On PatientsLikeMe, more than 10,000 people are living with ME/CFS, and they’re sharing their health data by tracking symptoms and evaluating treatments. If you’ve been experiencing ME/CFS, connect with others like you in the fibromyalgia and ME/CFS forum and speak with the people who know what you’re going through firsthand.

 Share this post on twitter and help spread the word for ME/CFS Awareness Day.


1 http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html


Canary in a Coal Mine- Raising awareness for myalgic encephalomyelitis

Posted October 28th, 2013 by

Everyday on PatientsLikeMe, people just like you are sharing their experiences, contributing to real-time research and raising awareness, together. Jen is part of your patient community and is living with myalgic encephalomyelitis (ME), sometimes called chronic fatigue syndrome. She’s working on a new project called Canary in a Coal Mine to help shed light on this largely misunderstood condition.

“Three years ago I became devastatingly ill. Now, there is not a single waking moment when I don’t feel sick. When faced with what seemed like an insurmountable obstacle, I felt the only choice I had was to transform suffering into grace. I believe that by telling these stories, by showing the world what it really feels like to live life with ME, we can change forever the way the world sees this illness. And, by showing the true face of ME, maybe we can put an end to the many injustices that ignorance creates.” –Jen