The International Day of Awareness for Chronic Immunological and Neurological Diseases is on May 12. (This year also marks the 25th Anniversary of the May 12th Awareness Day—more details about this day, and its history, are at the above link.)
My main focus for this post is Myalgic Encephalomyelitis (abbreviated as ‘ME’).
You could be forgiven for asking, “Myalgic encepha-what-now? What on earth is that?” That’s because, for the average person, this condition is often referred to as ‘Chronic Fatigue Syndrome’ (I’ve even mentioned that name on my about page).
However, ‘CFS’—as it’s abbreviated—is not the preferred name among patients. The trouble with this label lies with the f-word. You see, ‘fatigue’ can seem to downplay (and many would say, trivialise) the severity of what is actually experienced.
Additionally, ‘Chronic Fatigue Syndrome’ is frequently confused with ‘chronic fatigue’, though these are not the same. As I understand it, CFS is a debilitating and devastating neuroimmune condition (with a distinctive cluster of symptoms), while chronic fatigue is one symptom of a vast array of possible diseases.
Names and technicalities aside, here are some links that will help clarify what ME and CFS are all about. The information here may also be useful if you’re looking for resources and facts to share on May 12:
- Emerge Australia: An organisation that “advocates for, educates about, and provides information” on ME and CFS.
- MEAction: An international patient network “empowering each other to fight for health equality for Myalgic Encephalomyelitis”.
- MEpedia: A crowd-sourced encyclopaedia of ME and CFS.
- #MillionsMissing: The global protest movement (and hashtag) championing the rights of patients and increasing the visibility of people with ME (#pwME).
(If you want to be involved in generating awareness, check out links #2 and #4 in particular, and be sure to tweet/retweet #MillionsMissing posts on May 12!)
I realise there are many more helpful sites out there; this is just my shortlist. What’s on your shortlist? Do you know another website or organisation that everyone should know about for ME information, awareness, and advocacy?
If so, please share it in the comments section. Thanks!
(Last updated at 11:54am, 12/05/2017 AEST)