Slashdot Mirror
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.
Kind of moronic to shout down anyone researching the disease, then, isn't it?
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.
Yeah, lets protect ourselves from the implications of a stigma of "crazy" by acting as crazy as possible, that will surely help.
And just who is going to find that actual treatment if the activists drive out all the researchers?
I want a new quote. One that won't spill. One that don't cost too much. Or come in a pill.
I actually have this condition and was involved with the community a little bit.
The problem is that for years it was written off as a purely psychological problem. It used to be called "yuppie flu" because it often affected people with high stress jobs. It was often near impossible to get doctors to take you seriously or get any treatment because they believed it to be physiological.
In addition there is no test for it. It's not well understood, all you can do is rule everything else out and CFS is the only thing left that fits the symptoms.
For that reason there are some people who spent literally decades of their lives suffering, in pain, miserable and fighting against doctors who wouldn't believe them or accused them of not trying the psychological treatments hard enough. There are a also a lot of snake oil cures and an endless stream of people asking if you have just tried getting more sleep or doing some exercise or changing your diet. Fortunately my doctors were quite good but even I'm fed up of the amateurs.
It doesn't excuse this kind of behaviour but it has created a somewhat toxic environment that both sides need to work at fixing.
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SJW, n: "Someone I don't like, and by the way I'm a fuckwit" - AC
No. Social media doesn't turn people hateful. It simply allows already hateful people to express themselves in an environment where there's low risk of being judged by society and punished.
I.e. they are just unleashing their suppressed inner arsehole which has always been there.
It also amplifies what hateful people say because that's what draws attention, clicks and money. Me posting nice things about the post I'm responding to here on ./ usually gets me ignored unless its a really really good post. If however, I write a sarcastic, mocking, and funny post with some good details then I get lots of replies and moderations (sometimes good, sometimes bad). Most of human communication between folks is basically pleasant most of the time so you only notice when it isn't. And for some reason, probably the same reason people rubberneck at traffic accidents, people give more attention to the hateful comments. Until people change that basic behavior, the algorithms will keep pumping those more nasty posts your way. Don't know what to do about that though. Social media isn't truly a mirror of humanity, its more like a reality show where the most dysfunctional get the most attention. Or maybe it is...
"Those that start by burning books, will end by burning men."