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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."
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.
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!
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?
Blaming it on the sick people is not "research", nightmare.
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
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.
... guess the cause and possible cure will remain unsolved forever then.
Good job activists!
So,
If no one is willing to do research in this area anymore, what is your take on probability to ever understand CFS or find a cure?
Never sounds plausible.
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.
If the research, like the 1950's research on peptic ulcers, claims that it is a psychological condition, it's not at all moronic if you're hoping for an actual treatment that addresses the problem.
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.
Do you still have your appendix? Have you ever been rushed to an emergency room for strong abdominal pain that was treated with antibiotics? At any time at all?
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.
So what do you call this intimidation, if not silencing? Righteous?
If we keep laughing at the perpetual motion cranks, who's going to invent a fusion reactor?
True, but this activism seems to have resulted in people actually looking.
It is not like there is a shortage of areas that need scientific research in medicine. These folks can, and apparently did, easily find other areas to work in.
So a direct result of this activism is that there are now virtually no one left researching this.They all moved to less toxic areas of medicine.
If no one is doing research anymore, you agree that any potential cure will never be found?
Trans people did the same thing and won; so they rewrote the DSM to make it perfectly sane for a strong desire to mutilate your own genitals until they sort of resemble the other, even to the point of preventing the injury to heal by constant treatments.
. . . deadbeats, slackers, layabouts, bums, druggies, drunks, and malingerers.
Evidence, 60minutes Sex differences between men and women have been understudied.
in the vid: Female and Male pig hearts are very different in durability and size. It's the same in humans too. Human stem cells are in different concentration. Medication should be vastly different per sex, but feminazis don't like that, so we overdose young girls and women, and undermedicate them in other instances. Why? Because, MUH WYMMIN ARE NOT DUFFRENT THAN MEEN OL' MEN! (feminazi propaganda)
> 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=
The way they debunked everyone else, using credentials and authority instead of scientific facts. AE911Truth dot Org
I keep laughing at the fusion reactor cranks, you insensitive clod.
Thank you for not helping.
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.
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'.
There is also a long history of suffering caused by dismissing illness with real physiological roots as psychosomatic. Considering that it has already taken DECADES to have CFS sort of recognized as even possibly anything but psychosomatic in spite of a total failure to treat it successfully through psychology, it does kinda make sense that sufferers might want to call "no backsliding", doesn't it?
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.
That is true only of people in the so-called "civilized world". When this is done in Africa, it is still referred to as "genital mutilation".
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...
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.
What is your problem? Why pick on them? How dare you?
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.
Yeah man. It's the same thing with homeopathy. The only reason it has such a low success rate is because of the social stigma.
I can see why chronic fatigue sufferers might not want to wait half a century for an effective treatment.
You mean they prefer "never" to half a century? Because that is the effect they are having.
Most ACs are not even worth the keystrokes to insult them. Be generically insulted by this and ignored otherwise.
Research by a psychiatrist. Might as well be research by an astrologist, or an economist or something like this
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.
They are only hounding bullshit psychologists, who would be better employed as uber drivers or something where they do less harm
Gender dysphoria, like Post Traumatic Stress Disorder, is a fact mental illness cooked up by people looking for sympathy and doctors looking for money.
If you're still hungry, help yourself to another helping.
Have you been 'diagnosed'? Everybody should get 'diagnosed'. You have no business criticizing other people for their lifestyle choices! /s
Homeopathy can be the most effective treatment for many ailments precisely because it does nothing
> They rewrote the DSM to reflect insights into the actual causes of gender dysphoria
No, The level of "no" is pretty amazing. It's deeply interwoven with the political, rather than measurable physical and psychological characteristics. It makes no distinction between the male form and the female form, which have *many* clinical differences, and it makes no mention of the measured hormonoal or neurological distinctions that have been found among many transgender people. And it doesn't even acknowledge the cause or effect, nature of the common teen gender confusion which is almost always resolved as simple homosexuality by the age of 18.
Some reasons for this are pretty sinister. The DSM is used as a standard so insurers, treatment centers, patients, and clinicians can all be on the same page and mean the same thing when they diagnose. But vaguely defined, permanent conditions are a godsend for unethical or politically motivated practicioners, as is poor diagnosis with these conditions, because it means no expectation of recover and no end to funded treatment. It's treated as a permanent disability.
While I wouldn't defend this behaviour it's important to understand why even just suggesting that it is a psychological problem can be a real problem for people suffering from CFS.
If anyone puts forward evidence of it being a psychological condition then some doctors and even non-doctors will latch on to it. That stops people suffering from it getting the treatment they need, because it's cheaper to fob them off with some talking therapy (which they often have to pay for themselves in the UK) than say graded exercise therapy or making adaptations for them.
It even affects things like claiming benefits for their disability or getting their employer to make reasonable adaptations for them. It's very unfortunate that if someone loses a leg they get far more sympathy than someone who has a mental illness, but that's the world we live in.
This is a real problem. Mental health is an issue for many people with CFS, because feeling like shit all day every day tends to run you down a bit. But it's also a problem when the very very limited amount of money and effort available to research CFS is diverted away from addressing the physical causes. What is really needed is more money, but it's a fairly rare condition and you get the impression that half the doctors you talk to don't think it's real.
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SJW, n: "Someone I don't like, and by the way I'm a fuckwit" - AC
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...
Exactly what the people pestering the psychologists are hoping to do for CFS
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.
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.
We want solid good guys and bad guys. And the world to fit into our preconceived notions on how the world works.
We don’t want to think of that bully who we finally got the courage to punch in the face to stop him from harassing you is actually living a tough life and may not be eating every day.
Or the Fat Woman down the street isn’t lazy and just over eating but starving herself with constant diets and avoiding the public because of fear of ridicule.
When ever we find out that someone needs something extra to function in the we call it charity so we feel good offering it to them, but we don’t feel bad if we refuse.
No matter how tough you life is you can look at these people and figure that you must be a better person then them.
If something is so important that you feel the need to post it on the internet... It probably isn't that important.
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.
Treating pain in most instances is about managing the pain level while treating the underlying cause of that pain. If you're rushed to hospital with abdominal pain they'll start with painkillers, but will then move on to whatever other treatment is needed.
Current CFS and Fibromyalgia treatment does neither. They've been shown to be neurological, not psychological in cause, so relaxation and mindfulness can't cure them, and they're only slightly better than placebo as pain relief.
the study was severely flawed to the point of being nonsensical and the researchers refused to publish the data for reanalysis until they were ordered to do so by a court that also found no evidence of their claims of being threatened.
Claiming that Something being of psychological nature is bullshit. "Psychology" is not a science or treatment, "psychologists" are not researchers or doctors, and the patients are better off if the said "psychologists" are kept away.
I bet a lot of the ones harassing researchers are not sick.
Ah, you're just here to troll. Go on, then.
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
Read: The only people allowed to research are people who will come to the conclusions the crowd wants. That's a real good way to promote science and medicine.
"Cheer up and exercise more" hasn't worked for CFS sufferers all these decades. Why should the same approach work now? I'm not surprised he's getting shit on by those suffering from it. Look what happened with ulcers. "Just relax" didn't cut it either.
if you want people to think you know what you are talking about, just put ".com" at the end of everything you say.com
Actually, psychologist are doctors, and some are researchers. It's psychiatrists and chiropractors who aren't doctors.
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.
And yet here is a case where the researchers are not claiming the problem is psychological, they are only claiming certain therapies help patients. Yet some of these critics are jumping to the conclusion the study must imply such.
It is important to research both the cause path, and the symptom treatment path, because the former can take many years.
Truth is not stigmatization. Suppressing attempts to find truth is bigotry
Only the dumbest, the most retarded subhuman scum (i.e., shit like you) would so easily dismiss psychosomatic effects.
Last I checked, the vast majority of people in Africa are very much unwilling participants in the procedure.
>> 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.
No. Because many people with vague depression and other issues seek, not psychiatrists or psychologists, but "psychotherapists" with no formal training, no certification, and no supervision. So the bozo therapists quote misquote the DSM, which in this case cooperated with the vague standards. The therapy with these fools itself becomes part of the problem, re-enforcing confusing and confused standards and self-soothing but eventually destructive patterns of re-affirmation that their self-identity has nothing to do with their physicality or their social standing, it's all about how they "identify" and not about what they "do" or what they physically "are".
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?
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.
I think part of it is just that in maybe 7 out of 10 cases advice like "get more exercise" or "get some bed rest" appears to work because the person doesn't come back with the same complaint.
That's why there now has to be a rule that if someone comes in with chest t pain they MUST be checked for heart problems, because too many doctors were fobbing them off and then thinking they had done well when in fact they didn't come back because they were dead or had a severe stroke.
const int one = 65536; (Silvermoon, Texture.cs)
SJW, n: "Someone I don't like, and by the way I'm a fuckwit" - AC
Many illnesses have both a physical and psychical part. Mental illnesses are mostly based on physical malfunctions. Psychosomatic symptoms are real symptoms (people can die from them). The interaction between physical and psychical processes are complex and more complexities are discovered the more humans (and other animals) are studied. There is essentially no sharp border between mind and body, the mind is part of the body and the mind controls the body (and vice versa).
Treatments targeting psychical well-being for known physical illnesses (with known physical cause) is used today. That doesn't say the patients are crazy, just that doing this have been shown to improve the well-being of patients and so improving their quality of life. Longtime and debilitating problems tend to cause mental problems like depression which can in turn cause the physical problems to get worse indirectly or (yes) through psychosomatic effects.
This isn't about stigmatizing someone - it's about doing actual research and finding solutions to a problem. This is about people don't liking some of the results and harassing the researchers. This is about people not liking science, of people actually by their own will choosing to act crazy and should be treated as crazies.
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"Those that really have chronic fatigue symptoms would probably give an arm and a leg to get cured."
If I understand CFS correctly, no they wouldn't. They're too lazy and tired to care.
I work in healthcare but do not have a horse in this particular race. After skimming over publications by the researchers named so far I can only shake my head over your comment. CFS is real, and it has a predominant somatic factor, but like many somatic diseases it also has psychiatric components, treatment of which can help alleviate symptoms even if a somatic cure is still a long way off. If this bullshit did not hurt uninvolved patients I would say 'Then let them suffer!', but those activists are willingly jeopardizing the development of treatments for a condition we may well never be able to cure. And that pisses me off.
Rudolf Hess edited Mein Kampf. He was the very first grammar nazi.
It's hard to really get to doctors or scientists when there is no "pudding for the proof" that's easier to discover. The proof may exist, but it hasn't been found yet.
Unfortunately, I'm not sure if CFS isn't a partial result of severe depression or anxiety, or if they conditions go hand-in-hand because of what a person is physiologically suffering. It's difficult for people to believe that something they can't see or quantify in some way as "real".
All of the above does not imply that I think they should be treated poorly or with less gravity because it's potentially a psychological condition. On the other hand, psychological conditions can be nebulous, hard to measure, and patients often go in circles trying to fix themselves because the nature of the problem is the mind itself.
It also feels less rewarding than something you can sample, grow in the lab, treat with many things, and then make a pill and fix the person. Doctors and scientists don't often want to work on harder problems without any promise of a bit of success.
No idea what to do about it, as it's human nature more than deliberate cruelty, imho. (Health insurance providers, on the other hand...)
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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.
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.
I'd rather have homeopathy to treat cancer than Trump as a president.
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.
This must be a different CFS. CFS is not uncommonly associated with long-distance endurance racers that train too much without sufficient rest/recovery periods. Complete rest is the only thing that makes it go away.
Protecting themselves from the stigma of "crazy" by acting like an antiscientific mob of crazies? Sounds like a plan.
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.
[CFS has] been shown[1] to be neurological, not psychological in cause, so relaxation and mindfulness can't cure them, and they're only slightly better than placebo as pain relief.
[1] Citation needed. From all the information I've gathered, there is no hard evidence of an exclusive neurological etiology, nor a proven link to measurable physiological symptoms. From Wikipedia:
The cause of CFS is unknown. Genetic, physiological and psychological factors are thought to work together to precipitate and perpetuate the condition. A 2016 report by the Institute of Medicine states that CFS is a biologically-based illness, but that the biologic abnormalities are not sensitive enough to be useful as a diagnosis.
If you know better, edit the Wikipedia article and defend your changes.
[2] Even if a disease is physical, psychological methods can help cope with it. Until we have a fucking clue what the fuck causes it and find a fucking cure this is the best we can do, and it seems to work sometimes.
Tool.
Spend a year in a combat zone where your daily existence depends on the choice to kill another human or dying. Then when you come back, completely mentally broken from the experience, you'll begin to realize PTSD is a real thing.
Or maybe you won't.. better than 15% of combat veterans with severe PTSD just commit suicide.
Let's be clear though... being sad because you're getting bullied on Fakebook is not PTSD.
Good. Half the country would prefer you take the first option, please. And please, speed up the results. We'll all be better off for it.
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.
You're deluded. Threatening researchers you disagree with is not how science works.
You're missing the point. For the vast, vast majority of dysphoria victims, there is absolutely nothing wrong with their bodies. The condition is psychological and possibly also neurological, but there is little known about the underlying cause.
Treatment using so called gender "reassignment" methods is medieval at best, and outright butchery in many cases. It's like telling someone with phantom pain in their leg that the most effective treatment is amputation. That's not medicine it's quackery.
But the SJW crowd has intimidated and bullied the medical profession into giving up looking for an actual cure. Anyone doing anything other than promoting risky hormone therapy and dangerous surgery is labeled as "transphobic."
You seem to be confusing ASD (autism) and ADHD (attention deficit disorder). How brave of you to not let ignorance stop you from having an opinion.
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.
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.
Presumably, someone who will study the condition properly rather than just pronouncing it's just a bad case of the lazies.
So far you're kinda only providing evidence that it is actually a bad case of the crazies.
And that it is FAR WORSE than what the research shows.
But do keep shouting "I'M NOT CRAZY! YOU ARE CRAZY!"
Your analogies, equating medical researchers with "perpetual motion cranks" are also REALLY helping your case.
Well... not your actual case...
And just who is going to find that actual treatment if the activists drive out all the researchers?
Your question is kind of like who will solve our energy problems if we drive all the perpetual motion cranks away?
Mit der Dummheit kämpfen Götter selbst vergebens
Usually when someone says "ivory tower" these days it's derogatory, but it looks like those ivory towers might be important to protect scientists from the emotionally charged uneducated masses.
If someone's doctor is not taking their condition seriously they can just find another doctor. Bullying the scientists is dumb.
my wife has it, she describes it as arthritis but in your muscles. For all anyone knows, it could be a very mild form of scleroderma. Often the medicines for arthritis came with serious side effects including heart attack. However, exercise has always been a form of non-invasive therapy for arthritis. Psychological? It amazes me how hospitals took a while to realize that outpatient, when possible, had much faster recovery times. Your state of mind is _critical_ to your ability to heal and repair. The power of positive thinking has some merits. No, you wont cure cancer just by thinking positive. However, your chances of having an effective treatment regimen increases drastically when you have a positive attitude. It could be diet related like celiacs, another auto-immune disorder. The whole point of research is to find what things help, and then figure out why. We dont treat infections with bread mold anymore because we researched the why after we observed the effect.
I can see why chronic fatigue sufferers might not want to wait half a century for an effective treatment.
You mean, chronic fatigue sufferers are tired of long-time patient waiting?
scnr
Too much sugar in the diet.
Oh I forgot, we're in the age of alternative truths where bullying, identity and "understandable given the history" Trumps evidence.
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.
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.
PTSD is a real thing, but the number of people claiming to have it is far lower than those who actually do. When a clerk who spent her entire deployment drinking coffee and watching movies can get diagnosed with PTSD, you know that the system is ridiculously open to abuse.
Fuck you!
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.
If it needs a crank to work, how is perpetual motion? I suppose it could work its own crank, but the head nun warned us about such things back in the day.
There is some research that shows that people suffering from CFS have faulty mitochondria. That explains why they both feel tired and experience aching - their mitochondria are not delivering the energy their muscles need and they feel like they did too much exercise.
Exactly why they fail in that way and what, if anything, can be done to fix it isn't known. There has been some success with related conditions involving stuff like an immune system reboot (basically chemo, you kill your immune system and grow a new one that isn't broken) but there is no research into how it might help people with CFS, so it's all just desperate people paying for it themselves and no control at all.
const int one = 65536; (Silvermoon, Texture.cs)
SJW, n: "Someone I don't like, and by the way I'm a fuckwit" - AC
But over 50% of the population carries the Helicobacter Pylori bacterium in their gastrointestinal tracts, and peptic ulcers don't occur with that percentage. It was discovered that people that were already stressed were the ones that developed ulcers from the bacterium. https://articles.mercola.com/s...
If you post as Anonymous Coward, don't expect a reply.
Lol imagine being this stupid and butthurt over something you don't understand
No we just have more fucking anti-science idiots In the US, that's all.
Everyone here is an expert on everything and they don't like anyone else telling them otherwise.
It would be funny if it wasn't such clear evidence of our fast approaching downfall.
You do realize that pre-supposing a specific treatment and then working backwards is exactly how the big, high-profile PACE study being defended in the article worked, right? They even modified their definition of successful treatment after the study started in order to get their results, then claimed it was vexatious harassment when the patients tried to find out what the results would've been according to the originally-planned procedure. (Which is, you know, only the correct and scientifically valid way to carry out a study like this so no big deal.)
Also, they pretty much threw out all the objective measures of treatment effectiveness that they tracked - stuff like hours successfully worked, fitness tests, etc - and just paid attention to the patient survey part. Which would be a little iffy even if it wasn't for the fact that the whole thing was inherently and unavoidably not blinded, or the way they insisted that it totally made the patients more fit for work and they were all just malingering.
> 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"
Yes. But they are, according to the most recent studies. less than 10% of the pre-adult cases. It's a real goldmine for skeevy therapists who are more into establishing permanent, money and emotion sucking relationships with their victims. The best suckers are the ones these jerks can tap during teen years and keep through college, where they can completely screw up the kids' world views by turning them into LGBTQABCLMFAO social justice warriors, whose failures to graduate or study anything with any hope of later employment can be blamed on the oppressive male patriarchy. Sadly, any attempt to adjust their "treatment" or to raise alarm about their "therapoists" is then seen as transphobic. It's a lot like joining a cult: anyone who questions their treatment is cut off as transphobic.
> They should have picked a better condition to capitalize on. Sex reassignment surgery isn't that expensive actually,
I'm not speaking of the physical therapy, and yes, that part is expensive. $15,000 minimum, with easily $50,000 to include cosmetic facial changes. The long term expense is the hormones which can range from $300 to $2400 per year. The permanent mental care is roughly $10,000 for a licensed professional.. An unlicensed "therapist" can easily pick up $2,500 per year per patient, because there is no such thing as "successful treatment" for them.
It's not that they don't capitalize on other mental health issues. But this one is a self-righteous *gold mine*.
Ugh. *far higher
Not sure what country you're from, but basic SRS here runs about €10.000 for people not covered by universal health care (like temporary visitors who come here and pay for the surgery themselves), and most opt only for some superficial additional plastic surgery, say another €3.000. Hormones really aren't that dear; the common ones here are Systen and Progynova, at most €150 / year or so. A few people I know don't react well to those and they get an alternative for which they pay out of pocket, about €300 a year. There might be others which are more expensive but those are by far the most common.
I don't know anyone though who has fallen victim to "skeevy therapists"; access to fully licensed and qualified ones is available to anyone who needs it, and there 's extensive psych screening before even getting access to hormone treatments (which are prescription only). I do know that in the past there's been a few people self-medicating, but now that it's treated as a regular disorder, this is rather rare.
If construction was anything like programming, an incorrectly fitted lock would bring down the entire building...
This is true to an extent, but learning to relax and not stressing out is a somewhat effective way of treating stomach ulcers. Not terrible effective, but it does work.
Diseases with a physical cause can still be cured without medicines and sometimes this is the best we have. Telling someone with a cold to sleep and take plenty of fluids is not to suggest that the cold is psychosomatic. It's just the best we have.
Although I contradict, I support your point: One can get a stomach ulcer with no signs of H. Pylori (I did). And there are people who are H. Pylori-positive in the alimentary tract, but don't develop ulcers. So, yes, it is dangerous to stop running if we incorrectly think we've crossed the finish line.
Beyond that the PACE study published eight years ago was deeply flawed and reported a conclusion that was exactly the opposite of what their data showed. When they didn't get the results they hoped for based upon their original criteria they expanded the definition of "effective" to include symptoms getting worse, the opposite of helping. They then stubbornly refused to share their raw data and be transparent and were criticized not just by "activists" but by other researchers. The PACE study is a fraud and the author of the study is a fraud and shouldn't be allowed to conduct research in any field because after he has pulled a stunt like this how can he be trusted. It is very nearly as bad as the anti-vax fraudulent study published in the same Lancet journal. This guy is not the victim here, the real victims are the millions of people suffering from the disease who were offered treatment that makes their condition worse and not better because he wanted to publish despite his study producing a negative result and perpetrated academic fraud to do so. He deserves to receive daily abuse from the community. Every day he refuses to publish a formal retraction and apology for what he did he should be publicly shamed and ridiculed for his moral cowardice. He also shouldn't receive research grants or be employable in his field.
I don't know anything about gender dysphoria, especially how it relates to homosexuality, but I do remember in the documentary "Brain Sex" that scientists could make a rat's offspring homosexual, at will, just by altering the hormones in the pregnant mother.
That's pretty much how it works in the US, the GP is a moron.
Yeah, so lets not have anyone researching it at all.
That'll get em!
Oh wait....
Nobody cares about sick people with mental issues. Nobody , but nibbers and gaffots has the right of infinite attention. Send them back to the asylums and straight-jackets. Feed them less ... much less ... if that shuts them up.
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.
Some lifestyles suck. That's a fact. Yours for example. Parasite complainer. If you can't change your lifestyle then die off ... stop eating ... take a deep-water plunge with sea-snakes ... piss off a hungry orca and act like a seal.
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.")
See most back pain sufferers, for instance.
That socialism crap and the global warming religion are the surest signs I see of us going down.
If you truly believe that, scrape together a few bucks and provide funding for development of a perpetual motion machine.
The claim was actually that the biological illness gives way to a psychological problem allowing a cure through psychology. As others her pointed out, the study had some serious flaws. But you knew that because you read the fine article carefully, right?
Do you know what physical therapy is NOT? It's not a psychological treatment, it is a physical treatment.
Note that it is possible to walk on a broken foot given sufficient determination and possibly hypnosis. So is hypnosis an appropriate treatment for broken bones? Should we just quit all that nonsense with plaster and tell the patients they could walk if they really tried
Placebo and Nocebo effects. Look into them.
If exercise is one possible treatment for clinical depression - a bona-fide psychological disorder - then it can possibly be a treatment for other psychological disorders. It doesn't matter if it *actually* does anything, merely the act of trying with the expectation that it will help can be helpful in and of itself. The best part? Even if the patient is told it's a placebo, it usually still works!
=Smidge=
Sure, a positive attitude and a calm state of mind makes an excellent adjunct to a primary treatment. Also familiar comforts of home.
I would recommend that as an adjunct to treatment of any condition or for maintaining wellness. But if I break my foot, I'll be expecting that the bones need to be set, a cast applied and that I will need to stay off of it for a while.
Dig deeper. What evidence?
First they need to figure out how to diagnose it even. Now it's just last diagnose you get before being written off for good. Individually it could be anything. For those who have the real deal, lazy is the last thing, they try not admitting sickness until they drop and most never ever recover from "treatments" and "programs".
Stress can be a contributor but isn't a necessary pre-condition.Either way, to make it go away you will do well to take antibiotics.
How about telling them that the virus kicks it off for the first few hours, but the week of sniffles, aches, and tiredness are just psycho-social issues prolonging the symptions? So quit complaining and get to work!
This BS post is exactly the problem. Physical exercise and external pressure makes ME patients WORSE. It's quacks like you that have broken so many. Also many diagnosed are likely misdiagnosed as well! Both statements are true, but you need experience to rise above your petty prejudices.
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".
And yet, nobody tries to treat clinical depression psychologically anymore except possibly as an adjunct to anti-depressants.
It's silly to cure what you can't properly diagnose!
Not really. It's that these treatments destroy the remaining health for those with "true ME", whatever that may be. Some never recover. Most never fully recover. That's why people get upset by yet more fictious claims and no evidence or even fact based diagnose method.
Dig deeper. What evidence?
So? What gives the SJW's the right to bully the Scientist? If the SJW's are correct his scientific peers will do the job for them. Contrary to your view, most Scientists would love come up with novel solution outside the mainstream. The Ulcer example is perfect. The discover won world-fame and a Nobel prize.
Only in the sense that Wakefield was "bullied" over his paper claiming a link between vaccination and autism. Perhape the three of you can find a safe space somewhere.
The research in question has already been refuted simply by re-analysing the data presented. The "bullies" as you call them stand to be personally harmed by the bogus conclusions.
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
Wasting time on bullshit for years on the big pharma and government dole only makes you more experienced in bullshit and dispensing opioids.
As a back-pain sufferer who turned out to have 12 large gall bladder stones I thank you for your sharp observation. I could have had years more of pain medication and counselling instead of an operation.
I really can't believe stupid bullshit like this is modded high.
these idiots should be forced to take a 12 week course on nothing but the scientific method.
There is no course on the science curriculum of any respectable university that teaches "the scientific method". Go get a science degree in a real science (physics, not "psychology") and study until you're a PhD, you won't have to ever have to take a course called "the scientific method". You know why? Yep, because there ain't no such thing. If you won't take my word for it, go find me an example of a good university that teachers a course called "The Scientific method" to its science students.
Please don't weasel out with unspecific bullshit like "that's what they study all the time", because it isn't true. They study specific things like statistics, complex analysis, calculus of multivariate functions, classical or quantum mechanics, electrodynamics, whatever, but not one place in the world that has a serious science program teaches "the scientific method".
That you should mention it shows that:
a) you don't have an education in science and
b) you don't understand how research works at all.
Revoke their driving privilege till they pass a course.
What a non-sequitur. Science would suggest that driving privileges should be granted on the basis of one thing only, and that is driving skills and sufficient grasp of traffic rules. Why are you so anti-science?
There is no room in science for prejudices.
LOL. Science is full of prejudice. Most of the time it is due to the complete ignorance of the scientist about topics outside of their immediate research areas, but in the pseudo-sciences like psychology, which do not rely on evidence, it is even worse. Even in physics great ideas by brilliant scientists like Bohm were shunned by irrelevant, political considerations because no scientific arguments could be found against him.
In other words they are free votes / allies on any topic they dont understand.
Completely unsubstantiated piece of straw man. We already see that you're in the same boat as "they" are when it comes to science - you don't understand how it works and believe in fiction ("the scientific method", "there is no prejudice in science"), yet you somehow believe that you're better than the people who call out shitty "research" that is only produced to blame them.
You're exactly the type of person that you criticize and dengirate. You should be ashamed of yourself, and the people who modded you up should lose all their moderator privileges until y'all get a real education.
How exactly did you check? You were there at all times? Yeah, you pulled it out of your ass. Thought so.
From what see, it looks like anyone who suggests that there may be a psychological compotent to CFS is being pestered.
Let's look at another case: low back pain. It used to be that the only treatment for low back pain was surgery. But surgery never worked. There was no consideration of the possibility of a psychological component until Dr Robert Addison, in Chicago's Rehabilitation Institute insisted that it be looked into. Well it turns out that a malady that was considered to be 100% physical could not be cured until the psychological component was addressed. So now, low back pain (and pain management generally) is treated via multiple approaches. Low back pain may be a much better comparison for CFS than ulcers.
The people who are CFS activists online are demanding that their disease be seen only as a physical phenomenon. They come down hard if any psychological factor is discussed AT ALL. It doesn't matter how promising the research. If someone mentions a psychological component, the brigade descends, and as with most online brigading, it gets very ugly very fast. The people who are doing this research are trying to help. They don't deserve to have this kind of harassment.
You are welcome on my lawn.
On the other hand, if you are confronted with evidence that a certain treatment modality results in improvement of symptoms for some people with the condition and your response is to discount the reality of the results, you are actively harming those people who could benefit from the treatment.
That said, the question of âoeis it psychologicalâ is fucking ridiculous. Your brain and body arenâ(TM)t separated by a giant wall. Theyâ(TM)re not two different things that you happen to own. Theyâ(TM)re one and the same, with interlocking, reciprocating, and often indistinguishable areas of primary dominance.
The non-verbal parts of your brain know this intrinsically and use it for everything from homeopathic placebo effects to autonomic control of body systems. Your body knows this intrinsically and uses it for everything from pain response to orgasm. It seems the height of ignorant arrogance to stand in the way of using the mind to heal the body and using the body to heal the mind, especially when they are both affected by the illness.
When the only tool you have is a claw hammer every problem starts to look like the back of someone's skull.
The difference is that CFS HAS for a long time been treated as a psychological illness. It took years for anyone outside of the sufferers to even consider the possibility that it might not be psychological. Notably, people weren't getting better with a psychological approach. Sharpe's PACE study has been strongly rebutted already by other researchers.
In the case of back pain, the various forms of fusion surgery have been a complete failure. For years, surgical centers didn't let that stop them from promising miracles even as research demonstrated that the "abnormalities" on MRI claimed to be the source of the pain were equally likely to show up in pain free control subjects. However, there is still a strong belief that there is a physical basis for back pain, psychology (and anti-depressants) are considered a useful adjunct to physical therapy.
Here is some relevant background on CFS treatment and why patients are so vehemently against any claim that CBT and especially "graded exercise" is at all useful for CFS.
You should REALLY do more background reading. The study you cite as evidence was well debunked by other psychologists and medical researchers. There is considerable evidence for the physiological theory. Other research suggests that the graduated exercise therapy in the debunked study is actively harmful to the patient. Here's some background.
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.
Correlation is not causation/curative treatment.
Wait, you're saying there's a difference between the brains of men and women? I've seen a lot of published work saying there is no discernible difference between the brains of men and women. Sorry, you'll need to pick one, either there are differences or there aren't, you can't flip flop based on which is convenient for the argument you're having.
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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Drugs ARE a possible treatment for psychological disorders. The fact that medication is used does not make the illness any less psychological in nature.
Anxiety, depression, schizophrenia... all mental disorders, all treatable by tweaking the chemistry of the brain. Why not add Chronic Fatigue Syndrome to the list?
=Smidge=
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either there are differences or there aren't, you can't flip flop
I'm not a SJW. There are differences, they're biological, they're measurable, they've been measured, this has been published in peer reviewed medical literature, and it's been corroborated in multiple further medical studies also published in peer reviewed medical literature.
Conservatism: (n.) love of the existing evils. Liberalism: (n.) desire to substitute new evils for the existing ones.
A big part of the problem is America's welfare system. Since it doesn't exist, the disability system has become a de-facto welfare system. This is terrible for any number of reasons, this article is only highlighting one.
Cheap storage VM.
Wish I had some troll points.
Cheap storage VM.
I think part of it is just that in maybe 7 out of 10 cases advice like "get more exercise" or "get some bed rest" appears to work because the person doesn't come back with the same complaint.
That's why there now has to be a rule that if someone comes in with chest t pain they MUST be checked for heart problems, because too many doctors were fobbing them off and then thinking they had done well when in fact they didn't come back because they were dead or had a severe stroke.
There aren't many people who wouldn't benefit from some moderate exercise and a regular good night's sleep.
If a doctor recommends these, a sensible diet, and not too much booze/drugs, they are only going to do some good in the vast majority of cases.
But, yes, they do have to diagnose actual illnesses too.
To have a right to do a thing is not at all the same as to be right in doing it
Correlation is not causation/curative treatment.
Well if you want to split hairs, you can never 100% prove causation anyway, at least in something as complex as a human being.
There are (probably) people who take no exercise, sleep four hours a night, drink two bottles of whisky, and smoke 60 cigarettes a day, yet die peacefully in their beds from nothing more than old age at the age of 95.
But on average, you're better off doing at least some moderate exercise, sleeping for 6-8 hours a day, drinking moderately and not smoking.
To have a right to do a thing is not at all the same as to be right in doing it
You're missing an aspect here. If you walk on a broken foot out of necessity by whatever means, you do further damage and keep it from ever healing. You could even convert it to a compound fracture.
As it turns out, the study suggesting a psychological approach has been debumked by other researchers It seems the analysis was fudged. The researcher is being "bullied" the same way Wakefield was after his vaccine=autism paper was debunked and he kept doubling down on gis claim.
Even before that paper was specifically debunked, the course of treatment is recommended had been tried for a decade or two already and indeed had only made things worse for a number of people.
So, imagine you have a broken foot. For yars you were told there's nothing physically wronk, you could walk on it normally if you would just try. You were denied further disability and told to get back to work. Treatment plans are mad involving CBT to "allow you to deal with the normal sensations of walking on a perfectly good foot that you are somehow interpreting as extreme pain". When your foot swells to twice it's normal size, you're told that's caused by your psychosomatic pain. Then after 10 years some doctors started saying you know, it looks like there may be a physical aspect to this. Then some clown comes along with fudged data that claims the only real problem is that you haven't been practicing walking on your foot enough.
Given that, might you be tempted to make a few "mean tweets"?
I'm not personally invested in this, but I do feel empathy for people stuck in that situation. I also hate when people use fudged data to support strategies that have already been tried and tried again and again to no success.
The difference is that CBT is quite unlikely to cause harm. Many CFS patients have experienced harm from the "graded exercise" that the PACE study also suggested.
It turns out that the study in question has been debunked. The analysis was fudged. The fudged results are still being used to guide treatment of sufferers.
Exercise has been tried for CFS for decades. It tends to make it worse. CBT has been tried for decades. It doesn't show signs of making it better. It can be useful to devise coping mechanisms, but to pretend that is will actually make the patient objectively better (as opposed to just helping them make the most of what they have) is not helpful.
Thats wonderful, it means you can provide links.
homosexual != gender dysphoria. The formal simply prefers/is attracted to the same gender. Many of the formal don't prefer sex change (physical). The latter is that a person is uncomfortable with the physical gender he/she is in and prefers the opposite physical gender.
it means you can provide links.
Indeed. The Wikipedia article on the subject link to the most relevant peer reviewed articles on the physiological differences between brains of transsexuals and those of non-transsexuals, which in turn highlight the physiological differences between male and female human brains. Focus on the huge "Biological factors" section and its links and you're good to go.
PS: There's also a small section with psychological speculations, but those are fluff you can ignore without problems.
Conservatism: (n.) love of the existing evils. Liberalism: (n.) desire to substitute new evils for the existing ones.
Read this. Follow the links.
"Mean" tweets are not threats.
>. But, we know from science that this isn't the case - they have consumed and converted a certain amount of food into energy - it was conserved. It didn't go away.
That's a red herring; there are multiple different systems involved in fatigue other than how many calories you have in your body.
For instance, one of the limiters to the amount of strength you can exert is how long your neurons can keep stimulating the muscles. If you start doing weight training, for instance, your nerves are initially far more limiting than what your muscles are capable of.
Similarly, drugs such as caffeine and amphetamine can reduce your fatigue as well through regulation of other chemical processes.
If that's the study I think you are referencing, they didn't control for hormones the subjects were taking.
If that's the study I think you are referencing,
It's not a single study. There have been several since the first was published, all corroborating the original findings while providing even more precise measurements as technology advanced.
they didn't control for hormones the subjects were taking.
I find it unlikely that hormone usage after the brain mostly finished its plasticity phase, and even after it finished it, would be able to change the physiology that radically. We're taking differences in the volumes, neuronal density and synaptic density of different areas, as well as absolute and relative amounts of connectivity. But it's possible hormones an some effect, yes, including in the womb. That's left for future studies focused on figuring out causalities, as these are still more about correlations than causes.
Conservatism: (n.) love of the existing evils. Liberalism: (n.) desire to substitute new evils for the existing ones.