Wednesday, May 12, 2010

CFS/ME Awareness Day

Until my diagnosis and obsessive research as a result, I had no idea that there was an awareness day for CFS/ME. This is quite a shame. How are we to be better understood, receive more research funds, and find common workable treatment options with so much silence?

Chronic Fatigue Syndrome is life altering. Period. In order to obtain a diagnosis you must have a reduction in activity/functioning by 50%. Does this not seem alarming to the general public? Imagine, if tomorrow you woke up and suddenly were only able to do 50% of what you had done the day before. Imagine, if even accomplishing this 50% was like trying to climb out of bed with a severe case of the flu. Imagine, that this is a good day and on a bad day you are barely functioning at all. This has been my experience with Chronic Fatigue Syndrome, and I'm one of the more fortunate patients. Some patients are bedridden, others are absolutely unable to work at all, some are housebound, others have to have family members assist with basic self care needs.

Now imagine while you are dealing with all of this, to be told there is no cure, there are no universal treatments, there is no known (scientific proven) cause, and there is no way to tell if you will improve, sustain, or get worse.

My request for today is quite simple. If you know someone with CFS/ME, please don't doubt them, please don't assume they are lazy, please don't suggest treatments that you know nothing about. Instead, please drop by and say hello, please ask if you can drop off dinner for them, please be willing to come into their house and visit for just a little while. Please try to imagine how difficult it would be to live like this every day and to pray every day that someone, somewhere will come up with some research to explain this better, to provide better access to disability benefits when needed, and for treatment options that work for a larger portion of the patient group.


  1. Great post. If you can tell Rachel who organised the Blogging for M.E./CFS Awareness project it will get a bigger audience which is what it deserves

  2. Hear hear!

    Best wishes from Liverpool

  3. "please don't suggest treatments you know nothing about" yes, if only people woud get that one message!

  4. Excellent post, very well said indeed.

  5. I was suffer with CFIDS disease 17 years, and was time when I was completely paralysed, I tested many treatments, but now I feel good, I use real treatment on web