AIDS was the big issue in those days. AIDS would be a great option. But was AIDS more important than child abuse? Was child abuse more important than people starving to death in third-world countries? What about political prisoners? How about Alzheimer's disease?
In the end, I came to the conclusion that the cause probably chooses you. Your sister or your best friend is diagnosed with breast cancer, and you make it your mission to raise funding for a cure so your sister or your best friend survives, and nobody else has to go through what she's going through.
The personal connection is a big part of how I got into advocacy for ME/CFS. Someone important to me had this disease. I wanted him not to. Pretty simple.
Pretty simple, but not the whole story.
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The other day, a friend of mine e-mailed me a link to an article about ME/CFS research. An excerpt:
Patients struggling with chronic fatigue syndrome may be helped the most when standard treatment is coupled with cognitive behavior therapy or exercise therapy, new British research suggests.
The apparent promise of cognitive behavior therapy and "graded exercise therapy" offers considerable hope to patients combating the complex condition characterized by profound tiredness, impaired concentration, diminished memory, sleep difficulties and muscle and joint pain, the study authors said.
The findings also support the somewhat controversial notion that incremental adjustments in physical behavior and/or mental attitude can ultimately have a positive impact on the disorder, the authors said.
Full article here.
The friend who sent the link knew I was interested in ME/CFS and wanted to know what I thought. I wrote a fairly pointed response, explaining everything that was wrong with the study.
"What's the problem?" I hear you cry. "They found treatments that help ME/CFS patients. Isn't that a good thing?"
It would be, if they actually helped.
The truth is, there have been many such studies on cognitive behavioral therapy (CBT) and graded exercise therapy (GET). They are fatally flawed in the following ways:
1. The cohort problem
Myalgic encephalomyelitis is a neuroimmune disease characterized by chronic pain, crushing exhaustion, and post-exertional malaise (symptoms worsen with exertion, sometimes permanently). However, the definition for the disease called "chronic fatigue syndrome" has been broadened to include people who do not necessarily suffer from pain or post-exertional malaise—people who have some completely different disease that causes fatigue, or clinical depression.
So a study on this "chronic fatigue syndrome" patient population is going to have problems right out of the gate. It's like testing a hypothesis that chemotherapy can help diabetics, and including a bunch of subjects who have cancer instead of diabetes.
2. Sampling bias
Say you've got ME/CFS. You often have to decide whether to spend your tiny allotment of energy on a shower or making yourself something to eat. One day you hear about a study. If you become a subject, they'll require you to exercise. If you exercise, you won't have enough energy for the shower OR the food.
Do you participate?
Neither would I.
So it isn't simply that they've included subjects who don't have ME/CFS. They've actually set it up so that the real sufferers are less likely to be involved.
For more thoughts on the most recent CBT/GET nonsense, along with observations from a patient who participated, read CBT & GET: The Studies, the Science and the Pseudoscience.
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Bogus studies like the one above? They are why I've become an ME/CFS advocate. For other medical causes, raising awareness means spreading accurate information. For denigrated diseases like ME/CFS, raising awareness means constantly fighting the entities doing their best to lower awareness. You have to explain over and over again how positive thinking doesn't help, exercise hurts, and the disease isn't just in people's heads.
The cause chose me.
The cause needs all the help it can get.