In the next few days, I'm sure you will be inundated with e-mails from grateful patients who are just learning about your center and it's studies through the Phoenix Rising newsletter, but I still want my voice to be one among the many. I've been suffering from CFIDS/ME for the past 15 years: exactly one half of my life. This half of my life has been one of constant health challenges - everything from extreme vertigo to chronic pain, from sleeping 20 hours a day and still being exhausted to catching every cold, flu, virus or bug that waltzes past my window - and a million other strange symptoms that no doctor seems to be able to understand, let alone satisfactorily treat. And while I have managed to adapt, and continue to live my life to the best of my ability, there is always a sense of what this disease has stolen from me, from my friends and family, and what I know it continues to steal from the millions of patients around the world and their families and friends.
When I first got sick, I was a shy teenager who lived at the dance studio five days out of the week: I danced competitively, taught classes, and planned on making it my career. At the beginning of my illness, I took a week or two off, thinking that I would get better with rest, that this would just eventually pass. When it didn't, and I continued to sleep and not feel rested; continued to have to drag myself out of the bed to get ready for school only to have to lie down on the floor halfway through getting dressed; continued to need to be escorted from one class to another because I was too weak and would fall down the stairs, I started trying to make it back to the studio, but could only curl up in the corner when I got there, to fall asleep on the mats. I thought it was just like every other illness I'd ever had - I just had to push through it, deal with the pain, mind over matter: it could only get better. Eventually, when I realized that my efforts to try to dance were only making things worse - that the next day it would be twice as difficult to move, that I would be even slower, that I would need three or four days (and eventually three or four weeks) to recover - I had to give it up. It was enormously hard for me to do, and I still miss it, but it was the right thing to do for my health.
I honestly think that if doctors had had a test like the ones you all are trying, if they had known that exercising like I was would only make things worse, I would not have wound up as ill as I eventually became. I would've understood that my body wasn't capable of the things I was pushing it to do, and would've been able to explain that to others in my life - siblings, teachers, even doctors - who doubted me when all they had to go on was my word. I'm not saying that I still wouldn't have danced, or that I wouldn't have tried the various other things that have set me back over the course of fifteen years: being in a friend's wedding, traveling with my family, attending college - some things are worth the setbacks, some things you do because you can't not, even knowing the consequences. I still have to live my life: what I am saying is that I think my experience with this illness - and the experience of many other patients - would've been vastly different - and hopefully, vastly improved - if we were believed from the beginning; if treatments were based on solid evidence and were therefore helpful; and if we had some understanding of just what is wrong with us.
If the work you are doing right now, and the work I hope you will get to do in the future, produces the kind of results that enable aCFIDS /ME sufferer to say "Listen, this is why my body isn't working the way I want it to," or "I'm not depressed or crazy or lazy - these specific things are going haywire in my ability to produce energy," than you will have done more than you can ever understand. So I just wanted to say "thank you," and to let you know that - while I understand that your studies are not the cure-all I continue to pray for - your work is greatly appreciated by those of us who just want to know why, who need the answers, and the proof, and the hope that you all are working on providing.