Tuesday, May 12, 2009


ME/CFS Awareness
An interesting fact about white people is that they firmly believe that all of the world’s problems can be solved through “awareness.” Meaning the process of making other people aware of problems, and then magically someone else like the government will fix it.

--Christian Lander, Stuff White People Like

If you had told me ten years ago that I would be actively involved in an awareness campaign -- for anything -- I would have laughed. I always felt they were pointless. A poster or bumper sticker with one of those ubiquitous ribbons would hit my line of vision and I'd think, "Yeah, OK. You have succeeded in bringing [name of disease or social issue] to the forefront of my consciousness. I am now aware. How exactly does that help?"

I wish I could feel that way about myalgic encephalomyelitis (aka ME, aka ME/CFS, aka "chronic fatigue syndrome"), a debilitating disease that causes considerable pain, crushing fatigue, and shorter life expectancy. Instead of raising awareness, I want us to raise money to find a cure.

But it doesn't work like that. Money's tight, and if we're to convince anyone to part with it through donations or taxes, they need to understand that ME/CFS is a real thing. Despite popular misconceptions, it's not just being tired, it's not hypochondria, and it's not psychosomatic.

Awareness doesn't amount to an instant cure, of course. But it makes a big difference to those who are waiting for one. With a better-informed populace, people with ME/CFS wouldn't have to ...
  • deal with skepticism and scorn from their own friends and family.
  • explain for the upteenth time how they really do feel sick, even though they don't look sick.
  • educate their own doctors about the disease, or deal with doctors who think it's all in their head.

So. Happy ME/CFS Awareness Day. Stay tuned: later I'll talk a little more about the consequences of ignorance ... and just how deep the ignorance goes.


Wacky Lisa said...

I agree with you.
When I think of awarness campaigns I tend to think of things like breast cancer or type II diabetes.
I'm not sure if anyone is unaware of the existence of breast cancer at this point and I think most people would say it isn't a good thing.
But, people honestly don't know what the letters CFS even stand for and even if they do often they have mis-information.

cinderkeys said...

Heh. I thought about naming a specific disease and saying something about how I already know it's bad, but I didn't want to be seen as picking on people with whatever specific disease I chose.

I'm hoping ME gets to that point soon ... where, even if we don't have a cure, Awareness Day will be pointless because everybody knows about it.

Angel said...

Cindy, I did find some research on CFS which was done in Wales last year. I posted the entire article about it on my blog. Here is a link to it:


This is REAL, girlie!!! Seriously!! They're getting closer! There IS hope. It is a mitochondrial breakdown and because it is so closely related to fibromyalgia this study is going to help a LOT of people.

Sheesh. I have CFS but I didn't know there was a day for it. I knew about FM awareness day but I had not a clue about CFS. I'll add it to my blog calender. *hangs head in shame*

I think of Awareness Days like this: the more we talk about it, the more we see that it exists, then the more scientists will hear our collective voices screaming for something to be done. It's like we're trusting the pharmaceutical companies to do 'the right thing' by us. Shit. Right!! Hell no they're not! They're about greed and making another buck, which is why when I read about independent studies, like the one in Wales for CFS and even the one in Duarte, CA done on fibromyalgia, it truly brings me hope. It's not going to be the pharmaceutical company scientists who will save us. It'll be the independent researchers who actually give a damn about us who will find the answer.

Hugs and all the best to you,


PS. Also, I did answer your query concerning your friend. You can read the answer in the comment section of the entry you responded to.