Speaking at a biotechnology conference yesterday, Michael J. Fox mentioned that one of the drugs he takes for his Parkinson’s has been around since he was 5. He’s amazed that they haven’t come up with anything newer and better in 40 years.
I am equally amazed that in the 50-60 years since the polio epidemics, no one has come up with any drug that helps the fatigue and muscle weakness of polio (which is identical to the fatigue and muscle weakness of CFS). With 2 million polio survivors and 1 million CFS patients in the US alone, there would be a big market for something that would help with the exhaustion and paralytic muscle weakness that characterize both conditions.
The problem is that science didn’t notice that just because the polio virus was under control in terms of new infections, that did not mean there was a cure for those who had already been afflicted. You won’t find what you’re not looking for.
Fox asked "Who's funding innovation today?" At least in terms of CFS research, the answer has always been that most research funding has come from patients. Fox’s foundation funds research into therapies for Parkinson’s. There are plenty of other diseases where patients are scraping together a few dollars from their below-poverty-level disability checks to fund desperately-needed research, while Big Pharma focuses their attention on such ridiculous things as the anti-depressant for dogs that Fox joked about, or turning normal traits like shyness into medical disorders requiring lifelong daily medication, rather than the very real needs of people who are disabled by diseases without a treatment.
Fox criticized them for not putting enough emphasis on risk-taking which could lead to therapies for 20,000 of the world’s 30,000 identified diseases. Now, I will tell you that I’ve learned from college buddies who work in the industry that it takes a lot of work to come up with a new drug, so on one level, the industry doesn’t like to take those expensive risks, but I can also tell you that when SARS hit the radar, CDC announced in just 8 days that a "cure" had been found for it. SARS got a lot of publicity, but was never the epidemic that CFS or polio were.
By contrast, twenty years after I got CFS, they’re still telling me that the best they can do is give me a generic pill for sleep and a generic pill for pain, and a generic pill for every other symptom, each of which has their own set of side effects, which can be disabling in themselves, especially in combination. For example, taking the pain pill so I can sleep along with the allergy pill so I can breathe puts me to sleep for most of the next 24 hours, and in the few hours I’m awake, I can’t think clearly, which means that I can’t work. If you had to choose between sleeping and breathing, which would you choose? It’s a choice I make every night.
Fox criticized "it’s not about the money you spend, it's about spending the money more effectively," and suggested they focus less on getting headlines and huge profits and more on the effect they have on patients’ lives. Just talking about CFS patients, we cost the US economy between $9 and $25 billion a year in lost productivity, and the majority of us who are disabled have been unable to get Disability benefits because of false assumptions that CFS can be faked or (as I was told by a judge) that I could return to work if I’d get counseling for depression. (Depression which the judge’s own psych expert said I don’t have.)
It would be a real blessing both to the patients and to the economy to get us back to full-time work, but there doesn’t seem to be any interest by anyone in doing anything to get us back to work other than bullying. But telling someone to go back to work after they’ve been told by employers that they are too disabled to work is not a long-term solution – you lie your way into a few more jobs and get fired a few more times when it becomes obvious to yet another employer that you’re too disabled to work. Eventually, your reputation precedes you and you can’t get a job at all.
The fact that I’ve started my own business proves that I don’t need someone ordering me to return to work ... I need someone to make it possible for me to work more than 6-10 hours a week. When I tried12 hours in one week, that was enough to put me back in bed for the rest of the month.
This is common for most disabled CFS patients – the problem isn’t that they don’t want to work, the problem is that they can’t work enough hours to be employable. I’m told State VocRehab won’t bother with someone who can only work 1-2 hours a day, nor someone who needs excessive sick days, both of which are typical for CFS patients. If you have a close friend or relative who owns a business, they may be willing to create a job for an hour a day, but a lot of us aren’t in that position; the people I know in this town are either retired or employees or disabled themselves. I wracked my brain and the only business owner I could think of was the one who fired me and wasn’t going to take me back knowing that I was now even more disabled.
My symptoms are not unusual. In the US alone, they’re shared by a million other CFS patients, 2 million polio survivors, and 400,000 MS patients. That’s a good-sized market for any pill they might come up with to treat the combination of symptoms.
But if no one is looking for a treatment for these things, which normally fly under the media radar, I can assure you of one thing with absolute certainty: 20 years from now, CFS patients are still going to be without a treatment that can get them back to work. And, unlike anti-depressants for dogs, that’s no laughing matter.
No comments:
Post a Comment