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Medicine Social Networks Science

Are Online Activists Silencing Researchers of Chronic Fatigue Syndrome? (reuters.com) 273

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."
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Are Online Activists Silencing Researchers of Chronic Fatigue Syndrome?

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  • by peppepz ( 1311345 ) on Sunday March 17, 2019 @02:29AM (#58287122)
    Once again, turning otherwise normal people into hateful persons who believe themselves to be ridden with problems whose fault is anyone's but theirs. They have an illness? The fault is of the dishonest doctors who won't cure them because they're mediocre. Having devoted one's life to study and research is nothing to them, compared to collecting information on Facebook groups, made by real people and not by big-pharma servants.
    • by sjames ( 1099 )

      Yeah, and I'm sure those lazy asses in wheelchairs could all stand up and walk if they had an ounce of initiative. AMIRIGHT?

    • by thegarbz ( 1787294 ) on Sunday March 17, 2019 @04:29AM (#58287310)

      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.

      • by sfcat ( 872532 ) on Sunday March 17, 2019 @04:59AM (#58287378)

        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...

      • No. Social media doesn't turn people hateful.

        I'm not 100% sure I agree with you. I mean your point about allowing people to unleash their inner arsehole without reprisals is certianly true. However, I do think that people are more plastic.

        A classic example is of radicalisation of terrorists.

        However even with more normal groups, people are affected strongly by their surronudings. Maybe it still requirea a bit of latent inner arsehole to be nurtured and grow, but just about all of us have that.

        I don't think

        • Indeed you can use social media to radicalise people, but people aren't radicalised *by* social media. They are radicalised by others. Today it's on facebook, tomorrow it's the secret church, the day after it's their community support group (radicalisation prays on the weak).

          You're post was 100% on point, except that you should replace "social media" with "communities". This didn't start with social media, and it won't end with it either.

          • You're post was 100% on point, except that you should replace "social media" with "communities". This didn't start with social media, and it won't end with it either.

            OK, yes. Social media is neutral and people do the radicalisation. I think my oint was more along the lines of that social media enables it because it avoids the need to have a sufficient geographical density of people to form a community.

            But that cuts both ways, of course. For every new community of nutcases, there's a good worthwhile one as w

        • by rtb61 ( 674572 )

          The brain is an organ too, when you have a heart attack, they don't discuss your hearts feelings, they search for a biological problem. Psychological problems, when are they purely psychological and when are they biological, people tend to ignore, yeah your brain can make you think all sorts of weird stuff for all sorts of reason. Genetic faults, toxins, poor diet, poor blood circulation, all have profound affects on psychology and talking don't fix any of them.

    • by AmiMoJo ( 196126 ) on Sunday March 17, 2019 @04:31AM (#58287316) Homepage Journal

      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.

      • > 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.

        I'd expect that you know this from personal experience, but skepticism is the proper response to claims that cannot be scientifically established. There are enough claims, and enough good medical science, to establish that at least some cases of chronic fatigue syndrome are very real, and I hope that we can sympathize with the people experiencin

      • >"I actually have this condition"

        I do, too. Although doctors can't even decide if calling it CFS or FMS is more appropriate, since I have symptoms of both. The only thing tangible that shows on any test is severe deep sleep fragmentation (with no known cause). And it is very frustrating to be in intermittent pain and tired/exhausted for decades with almost no treatment that helps much. I think many of the doctors and researchers involved are just as frustrated as the sufferers. I pretty much gave u

        • by AmiMoJo ( 196126 )

          You have my sincere sympathies. I have found that management techniques work the best, learning to recognize when the cliff edge is approaching and having the confidence and strength to say "stop".

          • And mine to you, also. Fortunately my condition is not debilitating as it seems for some people. Like you, I try to know my limits and stay under them and just manage the best I can.

      • First of all: I am sorry to hear about your condition, and I hope that what I wrote wasn't offensive.

        I have a friend who, too, suffers from this illness, to the point that sometimes she couldn't even walk; now she's doing better. Some years ago she tried an experimental therapy, which I am certain was only a scam (it had all the signs of it), and costed her lots of money; however she is happy about having done it, because after each treatment she did feel better! I'm convinced that whatever they've done t

      • by e3m4n ( 947977 )

        yea my wife works at a cancer center like mayo and many of the doctors stop listening the minute they hear fibro mialgia. Now if your a male there are a couple things I would check into..

        1) get your testosterone levels checked. DO NOT accept the result as *normal* they give you back. Normal is 200 - 1200. Do you have any idea how big a range that is? On average a 50yr old male is going to score a 400. What you need to find out is what is *normal* for your age, not normal based on an extremely wide band of r

  • Where is the data for the PACE trial? https://me-pedia.org/wiki/PACE... [me-pedia.org]. Can unrelated researchers rake over same data to verify the conclusions within it? No.

    That said, harassment is bad. In order to play fair, activists should restrict their activities to release the "release the data behind the findings for the PACE trial that's now found its way into policy, or withdraw/retract the published papers and the policy". I don't myself have CFS/ME but I have been following it. Over 25 years now, I've known

  • by evanh ( 627108 ) on Sunday March 17, 2019 @04:14AM (#58287296)

    I believe troll is the recognised term. But psycho works too. When they come from a position of nonsense, they're not hard to identify. Usually the first words out are deluded speak.

    Facebook does a great job of friending them all to one another so they can amplify the recruiting process.

    The weirdest part is if one goes through an argument logically with them they rather quickly try to change the subject or throw a myriad of red-herring in to derail the exchange. Meaning they know it's all bullshit.

    • Troll is being generous. This is not trolling, this is electronic bullying or terrorism.

  • My ex had a cancer related surgery some years ago. That went well, but the cfs started right after it. At first we thought it was a side effect of the anaesthasia (perhaps it is a possible cause?) but in any case she didn’t get better. A specific test (I can’t remember what they checked, it may have been a number of indirect elements) confirmed the likelihood of cfs. And while she was always enterprising before, after a long home leave she took on a lower receptionist half time job just not to b
  • Central to this is the assumption that "psychological" means "made up". It doesn't have to the be that way. Consider classical conditioning of Pavlov's dogs: bell ringing predicts food and eventually bell ringing on its own causes salivation of dog. Is that psychological or physical? Is this just a semantic difference? The conditioning is underpinned by a real pathway in the brain that's been created and/or strengthened: so that's a physical thing. But ultimately you only know this has happened by watching
    • by ceoyoyo ( 59147 )

      People have the same reaction if you describe something as a placebo effect. The placebo effect can shrink tumours. It's an example of a psychological process that has real physical effects.

  • ... we need to remove the stigma surrounding psychological maladies. CFS may or may not have a psychological component. Find it, if it exists. Come up with a treatment. Cure the afflicted, or at least mitigate the symptoms so they can live nearer normal lives. Depression, anxiety disorders, fibromyalgia, panic attacks in the presence of WiFi routers are all real things. Psychological, but real. Sufferers should welcome a cure. Unless they have developed an unhealthy attachment to their ailment. Seeking the

    • by dargaud ( 518470 )

      panic attacks in the presence of WiFi routers are all real things

      Well, at work we fixed that with a bit of masking tape on the routers' LEDs. Can't get any more real than that !

    • There was a local woman who claimed to be sensitive to her neighbor's wifi. Said it caused her migraines. Her neighbor turned it off when he left for work, as soon as he got home and turned it on she would be on the phone complaining again. Eventually he agreed to not use wifi and she was happy. Later I got the whole story from a friend. At first buddy was almost convinced the woman actually was sensitive to wifi. Then he got smart and turned off the SSID broadcast and she couldn't "sense" the wifi any more

  • ... Sharpe says he's no longer researching treatments, because "It's just too toxic." ...

    By "it", I think he means the social-media landscape. There are other solutions besides ceasing research and hiding behind the couch -- ignore social media or hire someone to strike back at on-line activists like David Tuller. Fight fire with fire; sewage with sewage.

    How about a for-profit business specializing in on-line dissemination of vitriol, half-truths, personal attacks and veiled threats of violence? Oh. Never mind. We already got that.

    • Fight fire with fire; sewage with sewage.

      Ok, I'd like a couple examples of these kinds of fights. The latter seems kind of counterproductive, unless you have a shortage of sewage. Plus, wouldn't you fight fire by clearing out flammable objects and planting fire-resistant foliage?

  • Anyone claiming to have this should get down to a healthy weight, exercise for 30+ minutes 3 times per week, improve your diet, and get 8 hours of sleep at a regular time then see if you still think you have it.
  • They object to his work, they said, because they think it suggests their illness is psychological.

    And so what if it were? Is the brain magically not biological for some reason?

    Being an illness of the brain wouldn't make it "not real".

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