In an earlier post, I talked about CFIDS' lack of a public figurehead because publicly admitting you have any disease containing the word "fatigue" is almost a guaranteed career killer. If any of you are watching the Major League Baseball Playoffs, you might know that the Tampa Bay Rays actually have a good chance of making the playoffs. One of the players on their roster is Rocco Baldelli, who was hailed as the next Joe Dimaggio by many experts' accounts...until he came down with a mysterious mitochondrial disorder they termed "Mitochondrial Myalgia" three years ago.
Some of you may be wondering what Mitochondrial Myalgia has to do with CFIDS or some of its other names like CFS and ME. Well, starting in '05-'06, there have been a growing consensus by renowned CFIDS experts that CFIDS is a mitochondrial disorder. Not necessarily that it is caused by mito dysfunction, but that mito dysfunction occurs in a sustained way in the bodies of CFIDS patients. Dr. David Bell, who has been treating CFIDS since 1985, described in a nutshell that this is how CFIDS happens (my personal doctors have gone on to agree with him):
stressor (like mono, lyme, physical injury etc) --> abnormal immune cytokine cascade (messenger chemicals of the immune system) --> abnormal metabolism --> mitochondria in cells can't properly utilize oxygen --> the kitchen sink of symptoms
So you see the relation now between CFIDS and Rocco's diagnosis: any CFIDS patient will tell you they're the same. As a matter of fact, when Rocco first became sick, patients all resonated with the symptoms he was feeling:
"When I say "fatigued" my body is literally spent after a very short amount of time out on the field which makes it extremely frustrating and difficult, but it's kind of a reality right now." "I try not to be too dramatic when I explain what's going on, but it's not easy when you're out on the field for a very short period of time and you're done, and you're not really worth anything else out there. That's a tough thing to handle because you wonder why. You wonder why this is how your body feels.'' - Rocco in a March interview
We resonated with his loss of virility and wanting to run full speed with legs redesigned with concrete. I won't deny that I also cried foul that his docs made up a new name so that he wouldn't have to carry the shame and social rejection that comes with the official "fatigue" diagnosis all of us have had to accept. Either way, I expected that he'd retire like Ricky Carmichael, the G.O.A.T. of motocross racing whom came down with CFIDS, and promptly ditch the scrutiny of local media & public eyes for safer havens.
But something funny happened 3 years after he got diagnosed. The Tampa Bay Rays rise from obscurity and make their first playoffs, and during the playoff game, the commentators for the Rays' playoff game start discussing Rocco Baldelli's disease. "He's back on the team!" I shouted. And to my even greater surprise, the commentators discussed it in a respectful and well-informed manner! I didn't have to listen to the usual suspicion of laziness or alterior motives (spoiled athletes signing lucrative contracts & really letting go aka moving to McDonalds) and grimace my face into a Gollum. Moreover, his teammates & management are all supportive of him. In an age of management waking up, drinking coffee, and cutting losses from payrolls nonetheless. Bambino would've had a hell of an argument with the baseball gods trying to curse this team.
Truth is, I really don't care if they call his disease Whathefoo Syndrome. As far as I know, he is the closest thing to a PR figurehead for our disease that the public will listen to. I've heard through the grapevine he will consider becoming a spokesman after the season is over. Here's to hoping that he'll help our illness receive the type of public awareness it takes to gain traction with government-funded research. I've never been a baseball fan, and even if I were, I'd have two home teams to cheer for within earshot. Oh hell, those bandwagons are too rickety for riding anyway, so this is for you, Rocco. Go Rays!!