CFIDS Association president and CEO Kim McCleary

From the CEO's Desk

October 2009

Like you, we’ve got big dreams.

A big vision.

A world free of the suffering caused by CFS.

We’re working hard to change the future for the millions of people affected by chronic fatigue syndrome. CFS is a serious and complex illness, a puzzle that has defied being solved for a quarter of a century.

Like most complex puzzles, the more people working on the problem, the more rapidly we’ll identify the solution. Last year you helped expand our research program by enabling us to reach our $1 million goal for the first phase of the Campaign to Accelerate CFS Research. Now we’re building on that momentum and aiming even higher – to raise $1 million by year-end and a total of $5 million by the end of 2010. These funds will support the Association’s vital research and policy initiatives that will validate, innovate and, ultimately, eliminate CFS.

Find out what thousands of people with CFS told us they’d do tomorrow if they were completely well. Take a photo with the SolveCFS sign and upload it to our online album. Share your story. Engage others and encourage their support.

Jennie did. On Tuesday morning, Oct. 6, she posted the story below to her blog, her Facebook page and for her twitter followers to read. She has big dreams of getting her life back. And I want nothing less for Jennie and all the people I know whose lives have been derailed by CFS.

Be part of the solution. Together we can solve CFS.

Kim McCleary
President & CEO
The CFIDS Association of America
October 7, 2009

The Truth

Jennie Spotila, J.D.

By Jennie Spotila, J.D.

Fifteen years ago, I got sick.

People are always incredulous when I tell them I can pinpoint the onset of Chronic Fatigue Syndrome to within hours, but how can you forget the day you walked into a brick wall? I woke up that morning with a sore throat. I was working long hours, and going out at night with my new boyfriend (now my husband, David). The weekend was coming, so I planned to catch up on my sleep.

I walked the eight blocks to work, as always, but when I got to my office I felt horrible. I was so exhausted, I could barely hold my head up. Maybe I’m really coming down with something, I thought.

Then the headache came. The sore throat became so painful I could hardly swallow. I had chills. And I was no longer fatigued. I was dead on my feet. I could barely stare at my computer screen, let alone work on an assignment. I shuffled papers. I sat at my desk and panted, wondering what the HELL was going on.

I decided I should go home early. I packed my briefcase with cases to read and a draft memo. I told my secretary I would be working from home the rest of the day. I didn’t. I went home and to bed.

To be perfectly honest, I don’t remember the next few days. It felt like my head was stuffed with cotton, and steel encased my body. I couldn’t eat, couldn’t sit up or read or watch tv. I slept, but every time I woke up it felt just as bad. Sleep was not helping to lift the horrific exhaustion and weakness I felt.

I have been ill for 5,475 days. I was 26 years old. Now I am 41 years old. There has been no respite, no relief, no change. Do you even remember where you were or what you were doing on October 6, 1994? Because I was entering the black hole of CFS, and the life I had then was over. I didn’t know it yet, but it was dead and gone.

Please. We need help. We must fund research, and pressure the government to invest more in research as well. FIFTEEN YEARS of my life evaporated. I deserve better, as do the millions of people who suffer from this illness. I don’t often talk about the misery and suffering of living with CFS, but I am speaking out because I believe that if you knew, if you understood what this illness does, then you will help.

Watch this video. Then go to Solve CFS and contribute. Contribute a dollar or one thousand dollars. It does not matter. What matters is that you do something, because I have no chance of being restored to health without your help.

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