- Chronic fatigue syndrome researchers face death threats from militants.
- How NASA plans to make astrophysics fun with an ambitious social game.
- What is pseudoscience? “No one in the history of the world has ever self-identified as a pseudoscientist. There is no person who wakes up in the morning and thinks to himself, ‘I’ll just head into my pseudolaboratory and perform some pseudoexperiments to try to confirm my pseudotheories with pseudofacts.'”
- A list of science people to follow on Google+.
Some of these people with Chronic Fatigue seem to have way too much time and energy.
So the best defense is a couple of soft mattresses by the front door, and you call the cops while they’re napping?
Threatening researchers that don’t follow the “program” is becoming more common. Maybe it’s because of the growing lack of civil discourse…but it’s actually making it harder to do the work that will actually provide the cures, solve the problems, etc. I don’t understand the psychology of those doing the threatening…
It’s all one of the downsides of the Information Age. Opinion Bubbles form, where people with a fringe notion can echo their common belief off of one another, without any external contact. If something is so absurd that only 1 person in 1000 will give it the time of day, then there’s 300,000 people in the U.S. who think it’s true. If 10 percent of THOSE people are all active on the internet, that’s a national group of 30,000 whackaloons who, for the first time in history, are getting constant reinforcement that their particular form of lunacy is correct, and therefore everyone else who disagrees is either part of the conspiracy, or has been duped by it.
Once you buy into that mentality, it slowly becomes easier to justify a violent reaction in your own mind.
On pseudoscience:
“The problem is that many sciences are nonfalsifiable, such as string theory, the neuroscience surrounding consciousness, grand economic models and the extraterrestrial hypothesis. On the last, short of searching every planet around every star in every galaxy in the cosmos, can we ever say with certainty that E.T.s do not exist?”
String theory: Not science yet.
Neuroscience: How is this not falsifiable? If there’s a prediction about what interaction produces consciousness, wait until someone has brain damage that disrupts that system and ask them if they have a sense of self.
Grand economic models: Pseudoscience. Particularly dangerous pseudoscience.
Extraterrestrial hypothesis: “Hypothesis” being the operative word, there.
I find myself disagreeing with that article.
I’m slightly confused, how is String Theory not science? Science is a method for discovering how things work in Nature. String theory is science it is just not technically a theory, certainly not a scientific theory.
Precisely because it makes no testable predictions, it is not a science. There’s a whole industry of people just churning out bizarre universes. It might be considered to be pure mathematics, but science it aint.
Are researchers of quantifiable deseases threatened like this?
Just wondering because disagreeing with someone’s hypothesis as to the cause of a disease seem, well, like a psychological problem that may include other symptoms like, i don’t know, undue fatigue.
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People do not like being told that their promblems are “all it their heads” and, even though that is what is not being argued, they want something external to “pin it on” like a virus.
There are many psychological syndromes (I’m not saying CFS is one BTW) that are like this.
Electromagnetic Hypersensitivity;
Chronic Lyme Desease;
Morgellons Syndrome;
Chronic Candidiasis (thought by some to be the cause of CFS)
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I am not saying that CFS is like these (we don’t know, that’s the point) what I believe known psychological cause syndromes (those who believe in them would strongly disagree) I’m only saying there is a precident.
I think you’ve got the right of it here… their violent reaction to being told that the virus hypothesis in incorrect seems to confirm the diagnosis of psychological issues.
That’s not to say that there isn’t something else going on too, or that they are just imagining things. On the other hand, my wife has something that could be twisted into “Morgellons”: intolerable itching, pain, and breaks in the skin with junk in them. Of course, my wife isn’t batshit. Therefore she assumed that she had a neurological condition, and was also scratching herself in her sleep hard enough to draw blood. She found a medication that helps with similar pain from shingles, the itching and pain went away, and she stopped clawing holes in herself.
She didn’t jump to the conclusion that she was infested with invisible parasites that no medical experts can find, and assume that there’s a worldwide conspiracy against her and people like her.
“I think you’ve got the right of it here… their violent reaction to being told that the virus hypothesis in incorrect seems to confirm the diagnosis of psychological issues.”
I’d personally be careful equating a possible psychological problem with violence. It paints psychological problems with a very broad and uncharitable brush, helping to reinforce the unfortunate idea that people with them are all violent crazies. Your statement also seems to imply that everyone with CFS is sending death threats, which is rather uncharitable.
Another thing to note is that the article talks about one particular retrovirus being incorrect, not a general viral hypothesis. It is still possible that CFS has a viral or otherwise external component. One scientist in the article thinks it is a combination of external and psychological factors.
Anyway, I agree that death threats are completely idiotic and in no way justifiable. Just please keep in mind that most of us with CFS are not making them, and that we never would. :)
I was thinking the exact opposite of you. I think that CFS syndrome, if it is in fact psychological, is more like depression, fibromyalgia, anxiety disorders, etc. I don’t think it’s on the same list as those things you existed, which probably aren’t even actual diseases and are just different names for existing diseases. You’re being dismissive of CFS by lumping it in with that stuff and not with the psychological diseases that are definitely real.
The biggest problem here is the mental illness stigma, which is common among both patients and, sadly, doctors. People would be more likely to accept a psychological component to CFS (if that’s what the evidence shows) if we treated psychological problems just like any other disease. Of course they’re still wrong to object to actual evidence, but I can understand how a non-scientist would be frustrated by hearing a doctor say “It’s all in your head” (even if the doctor doesn’t say it that way), and if they do accept that it’s psychological they can’t afford therapy because most insurance plans don’t cover mental health costs the way they cover everything else.
You could go a long to way to get rid of this stigma by referring to legitimate, actual psychological diseases that very few people dispute are real. Of course nothing excuses death threats, but there is no reason to be so dismissive of psychological diseases.
I don’t think I made myself clear and I apologize.
I wasn’t being dismissive of CFS and stated that a couple of times in my post, I’m sorry if it came across that way. I wasn’t being dismissive of these other condition either for that matter; I do not doubt that there is something happening to these people whether it is physical or psychological or a little of both.
All I was trying to say is there is precident for a nebulous group of symptoms to be seen as a sign of something that it is not; I was not trying to say that CFS was not real, just that the cause has not been determined as of yet.
The conditions you mention are psychological and are classified as such; the ones I mentioned are believed to be psychological but the exact causes are unknown. CFS seems to fit closer with the second group which is why I used them as examples; there is a difference in that there is no known mechenism that could cause those other ailments whereas, while the exact cause of CFS has not as far as I know been determined, there are plausible mechinisms.
I agree that we need to treat mental wellness as seriously as physical wellness, and if CFS turns out to be wholely psychological it should be placed along side depression and anxiety disorders.
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Again, I don’t want anyone to think I equate CFS with those other “ailments”.
“Are researchers of quantifiable deseases threatened like this?”
Yes. The more difficult, debilitating, and ‘unknown’ the disease, the more desperate people become.
One example: multiple sclerosis. Crackpot theories as well as new potential treatments come up all the time, and pretty much any doctor who who points out that a treatment won’t work — or does research showing it doesn’t work — will get abuse from desperate folks who need to truly believe that the latest fad will cure them. The latest, biggest mess on that front is CCSVI.
Other illnesses and conditions that don’t have clear-cut causes and treatments have similar issues.
That’s right. I had forgotten about CCSVI and I couldn’t think of another example, thank you.
Your studies are completely unfounded! If you link my Chronic Fatigue Syndrome to mental illness one more time, I’ll kill and eat you and your entire family.
Man… spending my day issuing death threats sure is exhausting.
I say we put all that research in a fourth floor walkup.
Where’s MY death threat? According to sciency research, I just won’t feel validated until I get one.
They’ve seen your avatar Rev.
Scared shitless they are.
This is one of the worst comment threads I’ve ever seen on this site. I would reply with more cogent and rational responses to almost everyone in it, but I’ve suddenly gotten too nauseated to want to bother. All I’ll say is the disrespect and ignorance displayed here is incredibly insulting. Did you think any ME/CFS patients who aren’t militant assholes might read this thread?
Joey, I’m sorry if you took these comments as an attack on CFS sufferers. These comments are an attack on people who are sending death threats to people for trying to find a cause for the syndrome, but are unwilling to accept that the cause may be something they don’t like or that they think is insulting.
These people, the ones threatening to murder researchers for trying to understand and solve your disease, are the ones who should nauseate you. I find that my sympathy for someone wanes when they start intimidating those trying to help them.
We’re mocking the thought: “My exhaustion is debilitating to the point where I can’t get out of bed most days, and if you say that this is something like mental illness (something I am too good to have), I will find the energy to get out of bed and murder you because you don’t know what it’s like to not have the energy to do anything and I’m totally sane.”
And for those of us who have suffered through mental illness, the idea that you’d rather kill someone than have them say you might be mentally ill is pretty nauseating.
Thanks, Elyse, for your reply. I really appreciate it. A few things:
1. Of course the rest of us are nauseated by the couple of people who have been doing this. The problem is the vast majority of patients who aren’t are not having their stories told. This is the only thing being reported on about ME/CFS patients currently even though it’s a tiny tiny minority. (http://www.pugilator.com/awareness/the-danger-of-a-single-story-by-chimamanda-adichie/)
2. I completely agree with your last paragraph. That’s part of the problem: this tiny minority is *obviously* suffering from psychological issues of some kind, either along with ME/CFS or they’ve been misdiagnosed. (Bipolar people sometimes are.) So I would have hoped for some empathy for these people who are seriously ill.
3. ME/CFS overwhelmingly affects women. Since this site has such a strong feminist bent, I would suggest instead of linking to the one-sided story about fucknuts patients, a closer look at both sides of the story (and how misogyny fits right into it) is called for.
4. Finally, it’s fine to say that “we’re only messing with this group of people.” But comments like these: “Some of these people with Chronic Fatigue seem to have way too much time and energy,” “I am not saying that CFS is like these (we don’t know, that’s the point),” and the mocking jokes, have been levied at ALL patients for years, and also display complete ignorance of ME/CFS. Fatigue is not the hallmark feature, for one. M.E. has been extremely well defined as a somatic illness (http://newly-nerfed.net/2011/08/04/new-criteria-redefine-me/). Old prejudices and misconceptions are repeated all down the thread (with some exceptions), which is about the least skeptical position I can imagine.
If someone does a search for “chronic fatigue syndrome” on this site, this will come up, and instead of useful information they will see the same hoary old unskeptical, ignorant and empathy-free attitude that all of us patients experience at least some of the time, if not constantly in some cases (not mine, thankfully).
First I apologize for the joke I made, it was uncalled for.
Second, I really was was under the impression that there were no know organic causes of ME/CFS and that the disease/syndrome was thought to be almost entirely psychological. I have done some reading and, while there are many suspected causes, some of these are indeed organic. The supposed psychological component was the reason I used the examples I did, I realize that this made it appear that I was equating them all; I wasn’t but it appeared that way.
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As a skeptic I admit when I am wrong, about this I was wrong and am sorry. In my defense I will say that my insensitivity was out of ignorance and not malice; that no excuse but it is the truth.
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Also, while looking for information on this subject I came across something called Mickel Therapy. The woo is strong in this one (I hope you are not a follower of Mickel Therapy).
Thanks for that post, Mr. M. And oy, believe me, I try to dissuade people from that Mickel garbage. There’s a whole lot of blame-the-victim quackery out there, and to make it worse, there’s also a lot of questionable research and reporting.
For example, a paper from Emory linked “CFS” to childhood abuse. I don’t know a single other patient who has experienced both who hasn’t given the finger to that one. Unfortunately the media ran with that paper…despite the fact that there was a 2001 study that showed while childhood sexual abuse could lead to chronic fatigue (the symptom), neither sexual nor physical abuse were found to predict CFS, and fewer CFS patients reported abuse compared with controls. The Emory study never even mentioned the 2001 paper.
So I totally understand that one of the barriers to understanding is the wide and occasionally bizarre range of research (and quackery) out there.