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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.
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.
Where is the data for the PACE trial? https://me-pedia.org/wiki/PACE.... 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 three people personally with CFS/ME and totally see how debilitating it is to have, and frustrating to have to explain/justify in front of friends/relatives as well as some/many health care professionals. Just as MS has now advanced to treatable with a stem-cell reboot, and Parkinson's & Altzhiemer's are showing signs of pathogens being the cause, that's the direction of research that's being delayed by PACE directed findings (allegedly).
A twitter account to follow - https://twitter.com/keithgerag... - a medical professional with CFS/ME who's doing his best to sift through everything for the rest of us.
Kind of moronic to shout down anyone researching the disease, then, isn't it?
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.
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.
> Your question is kind of like who will solve our energy problems if we drive all the perpetual motion cranks away?
Well, there are good mathematical, theoretical and experimental foundations to presume perpetual motion is a crank hobby and not real science.
There are also good clinical foundations for psychosomatic illness to be an actual thing.
So your analogy is really terrible...
=Smidge=
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 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.
They rewrote the DSM to reflect insights into the actual causes of gender dysphoria, and the understanding that in many cases gender reassignment surgery is actually the treatment with the highest chance of success. Sadly that success rate is not all that high yet... due in part to the way society at large treats transgenders. And that includes the SJWs. No transgender I know holds much truck with the modern day nonsense propagated by these "allies", and think it's actually hurting acceptance of trans people.
If construction was anything like programming, an incorrectly fitted lock would bring down the entire building...
There is an even longer history of psychosomatic illnesses being correctly diagnosed as psychosomatic. And also a history of psychosomatic illnesses being incorrectly diagnosed as physiological.
As a fusion reactor is by no means a perpetual motion engine, I would wager that laughing at perpetual motion cranks gets people to actually look into energy, mass, quantum field theory and physics in general and not to chase pipe dreams.
the common teen gender confusion which is almost always resolved as simple homosexuality by the age of 18
While there are plenty of such cases mistakenly labeled as gender dysphoria (which is why one should be extremely careful with diagnosis given the nature of the treatment), there are real cases as well that have nothing to do with "confusion"
poor diagnosis with these conditions, because it means no expectation of recover and no end to funded treatment.
They should have picked a better condition to capitalize on. Sex reassignment surgery isn't that expensive actually, and most post-ops only require permanent hormone treatment which is dirt cheap.
If construction was anything like programming, an incorrectly fitted lock would bring down the entire building...
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.
Something being of psychological nature is not blaming the sick person. And the researcher is not even saying that chronic fatigue symptom IS psychological, only that some psychological treatments might help a little. If it is a neurological issue, psychological treatments to dampen the symptoms might be the best we have until medicines are developed.
I bet a lot of the ones harassing researchers are not sick. They are lazy bastards who claim to have chronic fatigue symptoms to scam the government out of disability checks and are scared that the real disease gets mapped and a working treatment they will be found out. Are your ears burning, Dog-Cow?
Those that really have chronic fatigue symptoms would probably give an arm and a leg to get cured.
I don't know how it is where you are but in Australia a psychiatrist has to have done a medical degree, internship, residency and then another five years or thereabouts of training while practicing as a doctor. A psychologist from memory needs a four year degree and a two year internship before they can be registered. Are things significantly different where you are?
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Of course! Because when there are hundreds of unexplained medical conditions to choose from, researchers will be rushing in droves to pick the one that has already proven itself to be a toxic minefield where activists decide which research is allowed and which one is bullied into silence. I can absolutely see that happen.
Rudolf Hess edited Mein Kampf. He was the very first grammar nazi.
Well, it worked for gender dysphoria. It's a real condition, but despite a total lack of physiological evidence they managed to bully the entire medical industry into removing it from the Mental Illness category.
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.
20 years of physiological studies have shown brains of people with gender dysphoria are physiologically similar to the average brain of people of the other sex. Even the rate at which this happens is known: about one in every 20 thousand newborns have the condition.
So, no, they did no bullying. They demanded medical studies, those studies were made, and they confirmed the condition is real.
Now the challenge is in figuring out what causes brains of fetuses to develop in this way and whether there's a way to prevent this, or somehow help them, before the misalignment between their body and the neurological mapping their brain have of their body causes the onset of the very real disease that is gender dysphoria. Otherwise, sex reassignment surgery will remain, for the foreseeable future, the only available, partial solution, for reducing the disease symptoms.
Conservatism: (n.) love of the existing evils. Liberalism: (n.) desire to substitute new evils for the existing ones.
I think the problem is that CFS is just a diagnosis for a set of symptoms. It appears that some people can treat the condition through psychological means. Others have had success through adjustments to their diet. I believe that there's a very real possibility that there are multiple rare conditions that can manifest these same symptoms.
If you can empirically demonstrate a treatment that works for some percentage of people suffering from these symptoms, you can start to examine the differences between the people for whom the treatment is effective and those for whom it is not in order to isolate the underlying cause. That doesn't help everyone, but it might help some people and it lets others know the look elsewhere for answers.
The other problem is that no one wants to be mentally ill or even thought of that way. Mental illness is for crazy people! Even people with mental illnesses aren't crazy enough to want to be called mentally ill. Maybe it's not as bad now that they won't lobotomize you, but there's a pretty fucked up history of how we've approached treating the mentally ill, so it's hard to blame anyone for not wanting to be regarded that way, even if they are.