Telethon Thoughts

One of the mothers on the Jerry Lewis Telethon said that her son "isn’t looking for special treatment". Well, neither are CFS patients. We’re just asking to be treated the way everyone else with a disability is treated.

I’m sure that if I said to someone with another disability the nasty things that have been said to me, that I would be immediately chastised for insensitivity. "How dare you say that, when it’s obvious he’s disabled?" Well, it was obvious to my last employer that I couldn’t work, yet when I say that I can’t work, I’m told to "just get off your lazy ass and get a job". Somehow, because my disability is CFS and not MS, that’s considered acceptable treatment. Except that there’s over 90% symptom overlap between MS and CFS; they are so similar that they are frequently misdiagnosed for each other. The only real difference is the name – they’re blessed with one that sounds medical and we’re cursed with one that doesn’t.

I’m not looking for special treatment in applying for Disability benefits. I meet the criteria. At times, I have far exceeded the criteria. I’m legally entitled to those benefits, they’re an insurance policy that I paid into for decades. If this were State Farm denying me payment for a home burglary, everyone would be up in arms that I was being taken advantage of by my insurance company. Yet, with far more evidence than required to be reimbursed for theft of a coin collection or TV, I’ve been repeatedly denied ... not because I don’t qualify for the benefits, but because of prejudice against the name of my diagnosis. If I bribed a doctor to change the diagnosis to MS, I’d get my benefits the next day, no questions asked, without my changing a word of my description of the symptoms.

"Oh, but all the lazy fakers say they have Chronic Fatigue Syndrome." Perhaps, but they don’t have abnormal blood tests proving there is something seriously physically wrong with them. They didn’t start a business when no one would hire them. They don’t have medical records showing that at every appointment for months they had a 101 fever. There are so many documentable abnormalities in CFS that anyone who’s willing to spend the money on brain scans and a full neurological workup can easily separate the lazy fakers from the real patients.

Dr. Nancy Klimas has said "there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis. And that has certainly given it a level of credibility that should be easily understood by people's friends and families, and certainly, by us, the health care providers." Should be, but isn’t.

I find that when I tell people that I have CFS, they snicker and make nasty comments about laziness and depression. But when I couch it differently "I have a neurological condition similar to MS", they’re solicitous and offer to go get my next cup of punch so that I don’t have to stand up and walk all the way over to the buffet table again. The only thing that’s changed is the perception. MS is a "real disease". MS patients end up in wheelchairs. There’s no vaccine or cure for MS. Well, all the same things can be said for CFS.

Researchers have found scientific evidence that the same virus is implicated in both MS and CFS. Does that change your perception of CFS? I bet it does.

Dr. Bruno believes CFS is another version of post-polio, and those who studied CFS back when it was called Myalgic Encephalomyelitis noticed that ME and polio travelled in side-by-side epidemics, and those who got ME were later immune to polio, leading them to believe the two viruses are closely related. Does that change your perception of CFS? It changed mine!

I’ve seen what polio can do. And while it’s all very well and good to be able to do things for myself now, I don’t want to end up later like my friend whose post-polio forced her into an electric wheelchair, so I don’t push myself, because "no pain, no gain" may be a good slogan for bodybuilders, but it’s a fast-track to total dependency for polio and CFS patients. Using your muscles to the point of pain now means paralytic muscle weakness later. It’s worth living in a messy house if it keeps me out of a power wheelchair. It’s worth letting someone fetch and carry for me at parties now if it means that I still have the ability to get my own glass of water 20 years from now when I’m home alone – because means I can still live at home instead of in a nursing home.