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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."
They try to protect themselves from the implications of a stigma of "crazy" that the society imposes on them when their problems are labeled as "psycho-" something.
And stigmatizing them even more isn't helping to them, or to the research.
I got tired of feeling sorry for myself, looked on the brighter side of life, cut out wheat, started exercising, and made sure I got enough sleep.
Guess he cured them of their fatigue.
chronic malingerers syndrome. they don't want a cure for their fake disease because then they don't get disability benefits anymore
If people that I were trying to help were attacking me, I would also lose interest.
Some people just want to be miserable.
I used to wonder about these people who complained about "online harassment". Then I was accused of it myself. Apparently disagreeing with people online is "harassment". It is even worse if you have good arguments to back up your positions.
I think the mechanism here is making someone feel bad about her opinions. A lot of people regard their opinions as facts and live in echo chambers where they only receive positive feedback. To enter the real world where someone presents opposition and backs it up with evidence is very hurtful.
Feelings are injured and a quick way to restore mental homeostasis is to write off the criticism as "harassment". Then, you are a victim and we all know about the sacredness of victim culture. Those who injure victims are oppressors and the writings of oppressors are wrong without any evidence needing to be presented. The fact that they deliberately harm victims is proof enough that their opinions and facts are utterly corrupted and must never be considered by serious people. The slogan "Comfort the afflicted, afflict the comfortable" sums it up neatly.
Shutting down free speech with violence isn't fighting fascism. It IS fascism!
If you want to see actual crazy... check out the feminists/social justice war on evolutionary biologists/psychologists.
This is INSIDE universities. An organised campaign to discredit anyone who uses basic biology to explain human behaviour. Hell, "discredit" doesn't give the right impression... they are outright trying to utterly ruin/destroy them.
Never, ever doubt that the west is in serious trouble. Your votes don't matter. Anti-science is now well established in academia.
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.
Words uttered online.
You can coose ro not read them.
I personally would put them up on a big wall of "Morons and Wanted Terrorists", point at them and laugh at them, if I ever started to care enough.
And I *hope* they threaten to come over. Hopefully trying to punch me. ... *cough* ... self-defense. :D
Cause boy would I have a reason for
... guess the cause and possible cure will remain unsolved forever then.
Good job activists!
These are not random sufferers shouting down this research. It is an organized lobby of disability lawyers and others who profit immensely from perpetuating disability fraud.
CFS is one of those nebulous "diseases" that is easy to use for a fraudulent disability claim because it is not well understood. Once it *is* well understood, that whole house of cards will come tumbling down.
You can even numb it with paracetamol (Tylenol in the US?)
The thing is, that that's a normal part of life, and you are supposed and expected to deal with it.
Sure, if somebody is just doing it to hurt you, he's still a dick and harassing you.
BUT that has to be distinguished from, as you said, the case of you just being *wrong*! In that case it hurts to have failed too, yes. But you go talk to a friend, update your views to now improved ones, and live with not being perfert. LIKE A HUMAN.
And that is what arose out of the "sheltered" vs "tough" styles of parenting. They are *both* idiotic ideologies. One treats kids like they are perfect snowflakes, the other one ignores that it does actually hurt for real.
None of them actually teaches dealing with it!
I came down with PVCFS (post viral chronic syndrome) after suffering from acute tonsillitis. The symptoms were bad enough that it led to me quitting university within a year and then having to start work. Somehow, miraculously after a year or so, I found myself in my dream job working for the UK wing of very large dotcom. I managed ok the year or so that I was there, until the recession hit, and I stupidly didn't stay in the job to find out if there was a chance I wouldn't be made redundant. I had to commute every day, literally from one side of London to the other on the train because I knew that I would hate the cultural vibe of West London if I moved there. So typically I would fall asleep on the train home nearly every day and also every day would start with waking up feeling totally "unrefreshed" from sleep. Basically feeling deathly more exhausted than I felt when I first went to bed. That was normal.
I soon found myself having the urge to stretch out on the floor to try and alleviate the symptoms at night and because I was living in a basement, Yoga seemed a logical choice.
However I left London and moved in with my brother and I stopped exercising again. I spent six months trying to do freelance work from home and was fairly depressed. My symptoms got extremely bad. At one point I'm convinced it felt like I was going to die. I would be bed-ridden for days on end. My Dad would come over to help my brother work on the house and I wasn't able to help because I knew that any excursion would take me out for an indeterminate amount of time. I still, at this point, didn't know what was wrong with me. It was also around this time (when things were at their worst) that I suddenly discovered a neat trick. (Or hack?)
I guess it was the frustration combined with my experiences with Yoga and meditation that I discovered that if I "flexed" the muscles in my skull or, effectively, tensed the muscles surrounding my brain for short periods it would produce a completely immediate and relieving cessation of symptoms. The sensations of malaise that I would be feeling all over my body would be immediately "transformed" into regular sensations of tiredness and then I would find myself doing natural stretches and basically feeling normal and rested.
Ten years later I am still doing Yoga and I try and run a couple of times a week or swim. I essentially feel recovered from the disease even though I know it is something that is always there in the background that I have to manage through exercise but I'm convinced that if I hadn't have found the "skull hack" it could have led to a very different life indeed.
is looney. And it's this now. Before it was always another obscure, whatever-was-in condition. All are married, by the way. Yes, before you shout about, all are female.
. . . deadbeats, slackers, layabouts, bums, druggies, drunks, and malingerers.
The way they debunked everyone else, using credentials and authority instead of scientific facts. AE911Truth dot Org
The PACE trials have been thoroughly shown to have poor and unethical results, much like the antivax, vaccines cause autism study. Because the PACE researchers are being called on their exceedingly poor processes and lack of professionalism, (by medical professionals and charities), they cry victim instead of owning up to the fault of their research and learning from it. The lesson if you want to study medicine, getting a bunch of people not suffering the condition you are studying and running a purely placebo based trial with exercise and mood music is as bad as those who claim homoeopathy has been proven in 'studies'.
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 turned the Internet's utopia (no, I'm not so naive as to believe /anything/ can turn into a real utopia -- but the Internet had some potential) into a downright dystopia.
They centralized an inherently centralized system by underhandedness and sleaze -- out of sheer greed.
They are antisocial media.
If these these people were really ill they would support this research, since they are instead choosing to weaponise social media proves they lazy loser scared of being called out.
Without trial, without justice, without legal help many with CFS have been imprisoned, even in European countries, simply from the belief that CFS is purely a mental disorder. Many are removed from their homes by police into vans and put into cells where their family can have no contact with them. You could understand why many with the condition take unscientific and poor studies (that do not even test for those with the condition) as a serious and life-threatening matter. If you faced prison & treats to your medical health simply because you suffered from a physical condition what would you do to survive and keep your family safe? Many turned to charities and to the medical professionals who are doing actual medical research and not only psychological counselling.
Researchers who have been disproved by clear medical evidence and poorly researched studies like the PACE trial or the vaccines cause autism trial are a threat to public health. They are easily disproved other medical professionals call for them to be pulled from conferences because of the literal medical harm they pose. The PACE researchers claim they are "victims". It is not surprising that they get emails. The researchers leading the charge of the antivax movement got a lot of abuse as well. Much of it from other medical professionals. It is not out of evidence The PACE researchers base their claims but sales and funding money for simple placebo based tests.
CFS does have diagnosable markers (not every thing has a blood test diagnosis), but researchers directly avoided testing those with the condition and then claimed it would be solved with a bit of exercise. They have directly worked towards the classification of it being a solely mental disorder which has directly lead to imprisonment for many. A run does not cure an autoimmune disease. Many autoimmune sufferers also cannot have a simple blood test for diagnosis. MS sufferers were also discriminated and imprisoned in many countries prior to more detailed scans. CFS can be tested but like many autoimmune or immune conditions they need multiple tests to get to a diagnosis and they are not as easy to test for as a genetic condition as they are often a triggered disease. Wouldn't be nice if every disease had a blood test and a genetic marker. But in the real world most do not.
They are quitting? They shouldn’t. They should not let the tyrants get their way. Join the ranks of the revolutionaries such as Martin Luther King Jr who refused to let oppressors and naysayers keep society from illumination and progress.
Afaik this study has been disproven or at the very least it's fairly shoddy. This of course doesn't excuse rude behaviour. But I can certainly understand how people can get aggressive when someone perpetuates irrelevant attitudes.
I have diagnosed ME/CFS. I have also tested pretty much everything under the sun. Let me first adress "you can walk on a broken leg". Well yes, but only for so long. The longer you walk on it the more it will get damaged. The same thing is true for ME/CFS. I tend to liken it with having the body energy system damaged, kind of like having a bad battery in a mobile phone. You will not improve the battery by using it. You need to put it down and charge it, even if it never reaches 100%, or the 100% is 30% of what it used to be.
Of course your mental state helps getting better. But suggesting you can get cured by being optimistic is like saying you can get rid of Aids for being positive. It's just plain stupid. If you have leave your home, for example for therapy, it's mostly going to be a net negative in the energy department. When I was at my worst, about 5 years ago, and I walked across the street to get food, I was absolutely shattered for 3-4 days. I had, and still have but more rarely, times when I can't even play any games. Because it takes too much energy.
Ps. If someone gets here through a search engine. I inject vitamin B12 and take Low dose Naltroxen (Note the low dose, research it, just regular Naltroxen doesn't work). Afaik they are the true workhorses, and the only thing proven to work for me, in regards of getting better. Oh, and don't forget vitamine D, since you probably aren't outdoors a lot.
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 be at home all the time and that she could bare manage.
yes, there is a lot of blaming the victim with this condition. We noticed the implicit scorn and disbelief because she didn’t look ill (though if you knew her well you could see she was all the time tired). And even if it was psychological, which I don’t think it was, well it would still be a kind of illness to treat.
we tried all kinds of food supplements, vitamins, exercises etc to no avail. I heard that lately she was doing somewhat better since she went for a gluten-free diet as an experiment - though she isn’t allergic to gluten it seems to make some difference (though definitely not back to normal).
I can assure you, that you don't know hell until you've been subjected to (well meaning) doctors operating out of their depth.
I'd like to start out by saying that I am old enough to remember when AIDS was a disrespected mystery illness. Patient activism was key in getting the illness on the map and taken seriously even if some over stepped the line with their activism. Please be considerate.
I am closely tied in to the CFS community. Most Slashdot readers already know that the journalists writing about science frequently just plain get it wrong. I found the Reuter's piece to be very biased and can say the following about what I think the CFS activists are thinking. I don't advocate trolling or any other form of abuse, I just want to offer a different point of view.
1) The CDC recognizes CFS as a real, physical condition, albeit one that is poorly understood. The CDC web page has more info. Current bleeding edge research is showing problems with energy production at a cellular level. Perhaps it is some other problem.
2) There is a highly controversial study called the PACE trial which many believe is highly flawed (see item #3 below). It claimed that using cognitive Behavior Therapy (CBT) and graduated exercise was effective in treating CFS. There are also problems with doctors dismissing CFS as a psychological problem. This causes many CFS patients to mentally link all forms of CBT and other psychological therapy to all the bad health care experiences they've had in the past. These are desperately sick people who the general health care industry has really put through the wringer.
In addition to historic problems, there is a sense that spending the minuscule research dollars available on CFS psychological therapy studies is an absurd allocation of resources. The expected return on that work is highly limited as it doesn't get at the root cause of the problem but only marginally improves symptom management. There is no standard diagnostic test for CFS. People are diagnosed with the illness by ruling out everything the doctors can test for. A diagnostic test is desperately needed. Doing any research on CFS is made all the more difficult because of the trouble in selecting subjects who actually have the illness and not something else.
3) The PACE trial is controversial due to reported issues with extraordinarily flawed science. I can't remember all the MANY errors reported about the study's methodology. The most glaring was that the PACE team is said to have changed the criteria for how disabled a subject was mid study - AFTER subjects were selected. This resulted in subjects who qualified under the study's admittance guidelines as "disabled" at the beginning of the study being considered as "healthy" at the end of the study EVEN IF THERE WAS NO CHANGE in the subject's health.
More info here:
http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/
A more diligent reporter should have listed the more glaring of alleged defects in the study and then asked Lancet if the criticisms of the study's methodology were valid or merely a "web rumor". If it is indeed a "web rumor", they need to get the word out as many (most?) leading CFS researchers believe that the recommendations of the PACE study are potentially quite harmful.
A really on the ball reporter would have noted that in the past the CDC web site advocated CBT therapy for CFS but quietly removed that recommendation a few years back.
4) The defining characteristic of CFS is "post-exertional malaise". A trivializing name that means that when someone with CFS does more than they are capable of they "crash" and stay stuck in an exhausted state for a prolonged period of time. It appears that when someone in a crashed state pushes themselves to do more, serious long term problems are created making the CFS worse for the long term and perhaps permanently. The PACE study advocates constantly pushing to do more, albeit on a moderate schedule. People with CFS however h
Researchers were treated as enemies by sugar trusts and guilt was pushed onto fat.
For common people, it's about prejudice. If it fits your "righteousness" model, it's merit. Otherwise: it's idea theft (wtf is "intellectual property"?), SJW action, undue government protection or simply an exception that justifies the rule that says "all [category] members are inferior".
TL,DR: Reality does not match my values, I could change them -- or kill the ones who exposed it and keep on being happy, whatever the cost to others.
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Basic stuff like not feeding trolls? Like not trying to have scientific discussions with people that are not scientists and refuse to observe rules of rational discourse? Or if they must listen to the trolls, maybe start studying the current mass psychoses and find a treatment? That would be Nobel-worthy.
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
If people trying to overturn the findings of scientists is a "new" normal, science has been failing spectacularly until now. The entire POINT of science is a competition of ideas. Let the hypothesis that withstands the scrutiny of all prevail. If you find yourself dropping the pursuit of knowledge because people who don't believe you make you feel bad, science is NOT for you.
What if chronic fatigue syndrome is somehow like that? What if somehow these patients have a condition where any exertion triggers a strong and abnormal fatigue response and this leads to a vicious circle wherein they get more tired with progressively less activity. That would explain why the condition is so resistant to treatment and why it has no obvious measurable hallmarks other than fatigue.
soylentnews.org
Have gnu, will travel.
This is one case where, given where we are at, it is better not to be diagnosed. When undiagnosed, most with it continue to struggle to pull out of it. When diagnosed, a large number quickly spiral into disability because they now "know" they have something that isn't their fault and can't be fought. They are wrong that it can't be fought, though not wrong that it is not often beat. Still, the fight is worth it. Denying it and fighting against it is the most effective means of slowing the march to disability that we have.
Too much sugar in the diet.
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.
The Russians have won. They have made the world a cesspool of distrust, greed, fear and hate.
Fuck you!
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.
There are no measureable symptoms and no effective treatment except a welfare check.
The article refers to activism, when it's really just sad ignorance. The US education system has been systematically devalued and defunded. The truth of science is giving way to something scary.
Politics and older people, who have even less excuse to argue with actual science, have worked hard to ensure that people get less and less quality education, and the value of that education has fallen in the public thinking(I'm loath to call their minimal cogitation "thinking.")
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".
People kill themselves because of psychological problems. The pain and suffering they feel is as real as anything else so its wrong to dismiss or diminish psychological ailments in the way these activists do.
Which is why these lazy, selfish idiots get so upset when people expose them for the lazy, selfish idiots they are.
There is no such thing as 'chronic fatigue syndrome', there are just selfish, lazy people. I bet it didn't exist 100 years ago, before the welfare state, and incredibly cheap food was available in the west...
ALL people who claim to have 'chronic fatigue syndrome' are selfish scumbags who think the rest of the human population are here to work our butts off to pay for THEIR laziness.
My ex went from a straight-a university student who worked hard, did part time charity work, and basically kept busy non stop for years to having to sleep for 16 hours a day for years after getting CFS after a bout of glandular fever. It had multiple distinct symptoms but no doctor was able to find a cause so quite a few wrote it off as a psychological disorder rather than physioloigical (note Iâ(TM)m well aware that psychological treatments are shown to help even if it does have a physiological basis). Went through years of blood tests, ct scans, sleep tests... ended up getting a specialist physician to oversea the entire process and the 4 other specialist doctors she was seeing. In a field related to the medical industry myself and being personally involved with this debilitating condition it upsets me no end that people think itâ(TM)s nonsense and/or would attack those doing genuine research /.er since 1997
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