Thursday, May 12, 2011

ME/CFS: Myths and facts

ME/CFS AwarenessI'll be honest with you. I normally hate awareness-raising campaigns. They tend to consist of:
  1. Mentioning a disease or problem that everybody already knows is bad.
  2. Saying that it's bad.
  3. No, actually, that's it. We're all aware now. Yay us!
That said, ME/CFS Awareness Day is upon us, and I'm going to join in the awareness-raising festivities. Why? Because after so much time, most people have no idea what ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is. They think they do, though. That's the problem.

Here are a few things you may believe about the disease, often referred to as "chronic fatigue syndrome," and what you should know.

Myth: "Chronic fatigue syndrome" means you're tired all the time

Fact: Though fatigue (read "crushing exhaustion unrelieved by rest") is one of the symptoms, there are many others. These include:
  • Chronic, debilitating pain

  • Post-exertional malaise—symptoms get worse after physical or mental exertion and require an extended recovery period

  • Greater susceptibility to fatal cancers and heart failure

  • Flu-like symptoms, such as joint and muscle pain

  • Cognitive impairment, including problems with short-term memory

  • Other common symptoms include cardiac arrhythmias, chemical sensitivities, food sensitivities, blurry vision, eye pain, irritable bowel syndrome, and a host of other conditions that are nasty in their own right
* * *

Myth: People with ME/CFS are slackers. They should soldier on, just like everybody else who gets tired.

Fact: Many people with this disease try to push through the pain and fatigue in the early stages; they attempt to continue working. Unfortunately, this tends to make them worse. A lot worse. (See "post-exertional malaise" above.)

* * *

Myth: They'd get better if they exercised.

Fact: Exercise is a wonderful thing ... for most people. It tends to make people with ME/CFS worse (see "post-exertional malaise" above). Additionally, if you don't always have enough energy to feed yourself or drag yourself to the bathroom, pushups are not going to be a high priority for you.

* * *

Myth: There's nothing I can do to help.

Fact: There's plenty. Start by treating the sufferer in your life with respect. Stay in touch, even if the person doesn't have the energy to contact you most of the time. Then, donate to this fine organization:

These guys are working furiously to find treatments, and they receive very little funding.

* * *

Happy May 12, everyone. Here's hoping the day comes when awareness campaigns for this disease are unnecessary. In the meantime, here's hoping that we can translate our awareness into action.


Juliet said...

Thank you for posting this, and for your advocacy on behalf of pwme generally - we need more people like you! I don't think I've come across anyone else without ME who has such a good grasp of how it feels.

Co-incidentally, I wrote a post for ME awareness a couple of years ago along the same theme of myths & facts - mine wasn't as succinct as yours though (I'm a terrible witterer).

I love your blog - I've only recently discovered it, and will be back. I haven't managed to listen to Everybody Knows ... or your other songs yet, but will do one day when the noise sensitivity's not too bad.

cinderkeys said...

Thanks, Juliet. I found your post and liked it better than mine. You didn't link it, so I will:

I'm glad you've discovered the blog. Hope your noise sensitivity gives you a break soon, and for as long as possible.