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.
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 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."
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.
I read this article a few days ago. This is the biggest problem with these whole social-justice social media warriors. They bully and bully and bully to get their way. These idiots draw conclusions, or more accurately, they _jump_ to conclusions. In this case the researcher did some research that suggested that exercise therapy can bring some relief. So they jump to conclusion that they think its all in their head and start bullying the researcher till he quits. Its fucking idiotic. These asshats have no clue how research works. for starters telling people that research is showing that exercise can bring some relief implies, in no way, that they are done and thats the best you can hope for. Why wouldn't you share this non-invasive and multi-theraputic finding with the world? The benefits of exercise are very pervasive. Furthermore, once you find a link, that's where the interesting part happens, WHY does it provide relief? Is it a dopamine response? A serotonin one? Perhaps there is something going on with exercise and the lymphatic system... Research starts at a 5000ft overview and starts zooming on on things that help until they find the 1 or more, most effective responses. THEN they figure out how to increase this to provide greater relief.
These social bullies dont deserve treatment, and thats exactly what they are doing with their behavior. REAL science is about following the research REGARDLESS of whether you _like_ the results or not. Its not about what you like. Do you want to be right or do you want to be happy? There is no room in science for prejudices. Leave that shit at the door and follow the research empirically. The idea that you can make science conform to your expectations is such an abortion of logic, these idiots should be forced to take a 12 week course on nothing but the scientific method. Revoke their driving privilege till they pass a course. The only reason they are not called out for this is because they happen to also be easily made to agree with any other policy issue. In other words they are free votes / allies on any topic they dont understand. It reminds me of that guy on youtube that goes around asking people at college stuff and listen to them give the most ridiculous answers based on prejudices.