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Are Online Activists Silencing Researchers of Chronic Fatigue Syndrome? (reuters.com)
Zorro (Slashdot reader #15,759), shares Reuters' report about Michael Sharpe, a medical researcher studying chronic fatigue syndrome, "a little-understood condition that can bring crushing tiredness and pain."
Eight years after he published results of a clinical trial that found some patients with chronic fatigue syndrome can get a little better with the right talking and exercise therapies, the Oxford University professor is subjected to almost daily, often anonymous, intimidation... They object to his work, they said, because they think it suggests their illness is psychological. Sharpe, a professor of psychological medicine, says that isn't the case. He believes that chronic fatigue syndrome is a biological condition that can be perpetuated by social and psychological factors...
Sharpe is one of around a dozen researchers in this field worldwide who are on the receiving end of a campaign to discredit their work. For many scientists, it's a new normal: From climate change to vaccines, activism and science are fighting it out online. Social media platforms are supercharging the battle. Reuters contacted a dozen professors, doctors and researchers with experience of analysing or testing potential treatments for chronic fatigue syndrome. All said they had been the target of online harassment because activists objected to their findings. Only two had definite plans to continue researching treatments. With as many as 17 million people worldwide suffering this disabling illness, scientific research into possible therapies should be growing, these experts said, not dwindling. What concerns them most, they said, is that patients could lose out if treatment research stalls.
Sharpe says he's no longer researching treatments, because "It's just too toxic." And he tells Reuters that other researchers appear to be reaching the same conclusion.
"Of more than 20 leading research groups who were publishing treatment studies in high-quality journals 10 years ago, Sharpe said, only one or two continue to do so."
Sharpe is one of around a dozen researchers in this field worldwide who are on the receiving end of a campaign to discredit their work. For many scientists, it's a new normal: From climate change to vaccines, activism and science are fighting it out online. Social media platforms are supercharging the battle. Reuters contacted a dozen professors, doctors and researchers with experience of analysing or testing potential treatments for chronic fatigue syndrome. All said they had been the target of online harassment because activists objected to their findings. Only two had definite plans to continue researching treatments. With as many as 17 million people worldwide suffering this disabling illness, scientific research into possible therapies should be growing, these experts said, not dwindling. What concerns them most, they said, is that patients could lose out if treatment research stalls.
Sharpe says he's no longer researching treatments, because "It's just too toxic." And he tells Reuters that other researchers appear to be reaching the same conclusion.
"Of more than 20 leading research groups who were publishing treatment studies in high-quality journals 10 years ago, Sharpe said, only one or two continue to do so."
Beyond that, they understand that if the problem is written off as being psychological, there is little chance that a physical remedy will be sought or even tried at random that might actually help them.
Based on the history of medical treatment of the peptic ulcer, they're probably right. For decades it was written off as the patient stressing too much and the advice was "learn to relax". Then finally, the problem was demonstrated to be an infection of H. Pylori. Even then, it took another 15 years before "learn to relax" gave way to treatment of the infection.
I can see why chronic fatigue sufferers might not want to wait half a century for an effective treatment.
I have Fibromyalgia Syndrome. There is no effective treatment, because it is about brain wiring. Exercise and positive attitude are the ONLY things that work. The best thing FMS and CFS sufferers can do is to stop hoping for a magic cure. It won't come. But taking hold of your life and pushing through it does work. You have ups and downs, but just letting it just wash over you destroys you.
It took me 20 years to understand how to control it, and to accept that no one was going to find me a cure.
Many physical disorders can be at least partially overcome through psychology if there is no other known treatment.
That doesn't mean the problem is actually psychological, and it certainly doesn't mean we should stop looking. Given sufficient determination, one may walk on a broken foot. That doesn't suggest that cognitive behavioral therapy is the best treatment approach to a broken foot.
Since people aren't BORN with Fibromyalgia, that implies that something changed later. It's not unreasonable to think that something else could change it back.
RTFA closer. There are now few people looking for a psychological treatment. That may be for the best.
Consider that once the 'learn to relax" answer became standard, practically nobody looked in to curing ulcers either.
CFS already has a history of terrible psychological treatments including verbally abusing patients to practically force them to walk with a walker until they collapsed. Mysteriously, this made things worse.
A big red flag here, a psychologist researches CGS, claims that psychological issues cause it to not get better, then claims that he's not suggesting a psychological treatment. Excuse me? How's that again?
Then read carefully, only researchers making similar suggestions are being pestered. On;y they are leaving the field. What remains is people looking for the biological/physiological cause and how to treat it.
When you read it carefully, it really does sound a lot like ulcer patients who rejected "try to relax" as the answer to their very much physical problem.
It may not be ideal, but it's certainly understandable given the history and it's better than discouraging research into physical causes and cures.
I think doctors have a cognitive bias (or biases) that likes to blame patients for their illnesses, especially if they can tie them to some self-help step like not enough exercise or some other perhaps true but unlikely "lack of effort" lifestyle choice.
I had a doctor who said my headaches would be helped by more exercise. Admittedly, I didn't do any structured kind of exercise besides daily mile-long walks with the dog. I bought an elliptical machine and began using it every day. Next doctor visit, "well, you're probably not getting enough exercise". I described my use of the elliptical and he looked at me like I was liar.
Finally I asked him, "OK, how much exercise and what type do I need? Be specific in terms of heart rate, duration, frequency" and then he rambled about hiring a personal trainer. Basically it was a bullshit suggestion like "reboot your computer" that had nothing to do with my illness that he assumed I wouldn't comply with, probably with the hope that I'd avoid him knowing I was guilty of non-compliance.
I think part of it is that doctors go through a ton of training and effort to become doctors and end up assuming if they can go through with complex, high-discipline programs to achieve their goals than anyone can, without recognizing that some people are less able for reasons which have nothing to do with moral judgements about laziness/character/morals. It's no different than rich people who blame poor people for not working hard enough.