what's wrong with MS?
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Well, nothing is wrong with MS. The disease keeps on giving, doing its evil thing day and night 24/7 for 365 days of every year. Its victims develop pain syndromes, visual symptoms, sensory dysfunction, and almost everything else that can possibly be linked to neurologic damage. The disease is alive and well. |
The field of MS is not doing so well. That is, the scientific field of MS research and treatment lacks something really big—a cause. That’s right. Nobody seems to know the cause of MS. Oh, some people may say that they do: It’s due to dairy products, or toxic chemical exposures, or a mystery virus, or stress responses, or whatever, but there’s no real scientific consensus. The lack of a cause makes definitive treatment impossible.
What about autoimmunity? Isn’t that the cause of MS? If we just teased out the strands of the immune system and fixed what’s wrong, the birds would sing, the sun would come out, and the patients would all get better. The problem with this approach is very simple: It’s not working.
Diet and stress and other negative triggers can compound MS symptoms. We encourage MS patients to eat right, exercise, and stay healthy, but patients actually have little control over their disease course. At the causal level, the autoimmune theory tends to fall apart. The most successful “disease modifying” (i.e. immune-suppressing) drugs come with side effects, raising the specter of an even worse brain disease: progressive multifocal leukoencephalopathy (PML). The cost, inconvenience, and serious side effects of most immune-suppressing drugs lead many MS patients to forgo treatment altogether. Sadly, the older interferon-based drugs don’t work very well, either. Large clinical trials have shown they only prevent about one third of MS attacks. Who wants to inject a drug every day and put up with side effects for something that is only 33% effective?
Whether new or old, the use of immune-suppressing drugs may not be the answer.
Why has MS research been so slow to develop promising new theories? One reason, not often mentioned, is the medical status quo. The committees who judge new research, sometimes cutting-edge research, are those same doctors whose research already enjoys substantial funding. The same doctors who have failed to find a cause for the disease in the past 50 years, but whose power and position allow them to continue to garner little nuggets of knowledge. They make up the panels that adjudicate new research funding. And so MS research moves incrementally forward, and researchers are kept within bounds in order to secure funding. Apparently, this is good enough to ensure a researcher's ongoing success in a field that isn’t really helping its patients as much or as quickly as it could.
I attended a national MS research meeting recently. An esteemed Eastern professor, a keynote speaker, talked briefly about his research on T lymphocyte targets, the purported mediators of MS autoimmunity, then proceeded to introduce his new movie. That’s right, a movie, made by this professor, a one hour grand tour of “life.” It was a good movie, I enjoyed it. Even though his “talk” went way over the allotted time, the movie got a big ovation from his peers. What was my takeaway? That the professor wasn’t getting anywhere with his substantial lab and MS research funding, so he pulled a bait-and-switch. He wowed us with life itself. What could be grander? His hubris, perhaps.
That’s why I started this blog. To help MS doctors and patients and their loved ones stick fiercely to the topic at hand: What causes MS? To provide new ideas about this old disease. To bring the current moribund research effort around to something more effective. Ultimately, to help patients who need to be helped before the progressive neurologic dysfunction associated with MS ruins more bodies, marriages, and lives.
Here’s how I propose we fix things: First, let’s find and agree upon a cause; second, let’s open up the field to new ideas so that the research really helps patients get better.
I am devoted to MS research that opens doors and pursues cures. I hope you will join me.
Royalty-free stock photo ID: 156885323
What about autoimmunity? Isn’t that the cause of MS? If we just teased out the strands of the immune system and fixed what’s wrong, the birds would sing, the sun would come out, and the patients would all get better. The problem with this approach is very simple: It’s not working.
Diet and stress and other negative triggers can compound MS symptoms. We encourage MS patients to eat right, exercise, and stay healthy, but patients actually have little control over their disease course. At the causal level, the autoimmune theory tends to fall apart. The most successful “disease modifying” (i.e. immune-suppressing) drugs come with side effects, raising the specter of an even worse brain disease: progressive multifocal leukoencephalopathy (PML). The cost, inconvenience, and serious side effects of most immune-suppressing drugs lead many MS patients to forgo treatment altogether. Sadly, the older interferon-based drugs don’t work very well, either. Large clinical trials have shown they only prevent about one third of MS attacks. Who wants to inject a drug every day and put up with side effects for something that is only 33% effective?
Whether new or old, the use of immune-suppressing drugs may not be the answer.
Why has MS research been so slow to develop promising new theories? One reason, not often mentioned, is the medical status quo. The committees who judge new research, sometimes cutting-edge research, are those same doctors whose research already enjoys substantial funding. The same doctors who have failed to find a cause for the disease in the past 50 years, but whose power and position allow them to continue to garner little nuggets of knowledge. They make up the panels that adjudicate new research funding. And so MS research moves incrementally forward, and researchers are kept within bounds in order to secure funding. Apparently, this is good enough to ensure a researcher's ongoing success in a field that isn’t really helping its patients as much or as quickly as it could.
I attended a national MS research meeting recently. An esteemed Eastern professor, a keynote speaker, talked briefly about his research on T lymphocyte targets, the purported mediators of MS autoimmunity, then proceeded to introduce his new movie. That’s right, a movie, made by this professor, a one hour grand tour of “life.” It was a good movie, I enjoyed it. Even though his “talk” went way over the allotted time, the movie got a big ovation from his peers. What was my takeaway? That the professor wasn’t getting anywhere with his substantial lab and MS research funding, so he pulled a bait-and-switch. He wowed us with life itself. What could be grander? His hubris, perhaps.
That’s why I started this blog. To help MS doctors and patients and their loved ones stick fiercely to the topic at hand: What causes MS? To provide new ideas about this old disease. To bring the current moribund research effort around to something more effective. Ultimately, to help patients who need to be helped before the progressive neurologic dysfunction associated with MS ruins more bodies, marriages, and lives.
Here’s how I propose we fix things: First, let’s find and agree upon a cause; second, let’s open up the field to new ideas so that the research really helps patients get better.
I am devoted to MS research that opens doors and pursues cures. I hope you will join me.
Royalty-free stock photo ID: 156885323