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Online activists are silencing us, scientists say

reuters.com

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Re: Online activists are silencing us, scientists say

#331

Post by bjourne »

nateberkopec wrote: post #10

Over the next 20 or so years, expect a lot of syndromes/conditions to be reclassified, as Michael Sharpe puts in the article, as "biological condition[s] that can be perpetuated by social and psychological factors.". I struggled with RSI for a couple of years until I read John Sarno's "The Mind-Body Connection" on the recommendation of someone from HN. Sarno's thesis is that many chronic pain conditions (those withou…

It is not crazy at all. But realize that patients that suffer from these disorders have likely been hounded for decades by doctors, employers and various government workers. I think they have heard all the variants of "I think you are faking it" that you can ever think of. That doesn't excuse the patients death threats, but one should thread carefully.

There are also a lot of diseases that were thought of to be psychosomatic that turned out to not be such as peptic ulcer disease. There is also gender bias in play. Pain or illness affecting males are more likely to be classified as physiological while the same thing affecting females is more likely to be classified as psychological.

Re: Online activists are silencing us, scientists say

#332

Post by internet_user »

nateberkopec wrote: post #27
jimmy1 wrote: post #15

Earlier quoted context omitted.

> the pain is real, it's just caused by processes in your brain, I don't find this particular statement very revolutionary. We have known for a long time that physical pain is manufactured by the brain as an evolutionary tactic to help us prevent further harm to ourselves. If we didn't "feel pain" when we were on fire, we would burn to death.

I completely agree with you, but our society has such a stigma around mental illness that if you tell someone their back pain is caused by repressed emotions, you get what happens in the article.

Oh so you've already made the conclusion its a mental illness?

You are the reason why such reactions occur.

Re: Online activists are silencing us, scientists say

#333

Post by makomk »

lcall wrote: post #210

My doctor[1] says the PACE trial was very flawed in methodology and interpretation of results, and set back research significantly because it was seen to show "it's all in your head" (if I understand correctly), thus discouraging research into physical causes. She also says the only known effective treatment is to learn good pacing: careful budgeting of one's energy expense. But regardless of whether we agree medical…

The trouble with the PACE study isn't just its flaws, but also how the researchers responded to anyone that challenged it.

For example, in order to get meaningful results from a trial like this you need to choose your definition of success before the trial starts. The plans for the PACE study did have such a definition, and while it wasn't great it also wasn't terrible. The final study didn't use it; it used a new and much weaker definition. So far this is all sadly pretty commonplace.

Then the patients involved in the study got wind of this and tried to find out what the results were if they used the original, planned methodology. According to the researchers, this was a dangerous and vexatious attack on science by activists - and because they were respectable scientific figures working for major institutions, and the people questioning their research were mostly disabled women who were, according to the mainstream consensus, nuts, people believed them.

This article is basically a direct extension of this tactic, and it's working. I can already see a few folks elsewhere in the comments calling on universities to sack the few scientists who questioned this...

Re: Online activists are silencing us, scientists say

#334

Post by internet_user »

PaulHoule wrote: post #199
jimmy1 wrote: post #15

Earlier quoted context omitted.

> the pain is real, it's just caused by processes in your brain, I don't find this particular statement very revolutionary. We have known for a long time that physical pain is manufactured by the brain as an evolutionary tactic to help us prevent further harm to ourselves. If we didn't "feel pain" when we were on fire, we would burn to death.

That is true about acute pain. It is not true about chronic pain. Acute pain will get better if you rest, chronic pain won't. Most chronic pain sufferers will feel better if they behave as if the pain doesn't exist, increase their activities, get less depressed, feel less pain... The core of fibro identity, however, is that fibros don't experience the benefits of exercise, they get the pain but they don't get the gai…

That's because most cases of fibro is undiagnosed small fiber neuropathy.

Nothing to do with psychology, and everything to do with destruction of peripheral nerve tissue.

Re: Online activists are silencing us, scientists say

#335

Post by anigbrowl »

Angostura wrote: post #60
rtp wrote: post #42

I think that ME/CFS will go the same way as MS. Once upon a time, not long ago, MS sufferers were deemed "hysteric", "crazy" etc, until there was technology that could show physical evidence of the damage caused by MS.

Except, of course that no-one sensible is calling these suffers 'hysteric' or 'crazy' are they? Certainly not this researchers. They are simply saying that their symptoms may have a psychological component. Which should not be controversial, if evidence-based.

Are you sure about that? Insurers and primary care doctors are often very dismissive of symptoms, and may invoke the (wholly innocent and well-intentioned) arguments of researchers to deny treatment. That's not the fault of the researchers, but conversely researchers need to be mindful of how their work might be employed in the service of economic rather than clinical considerations when developing their hypotheses.

Re: Online activists are silencing us, scientists say

#336

Post by internet_user »

hn_throwaway_99 wrote: post #142
theli0nheart wrote: post #118

Earlier quoted context omitted.

> if you tell someone their back pain is caused by repressed emotions, you get what happens in the article. But...you would (or could?, or should?) never tell someone that, because how would you know? Maybe there is some link but to conclude that it could be the case is pretty silly. So it's not like that's a stigma, it's just a statement not based in fact that evokes a strong reaction because you're telling someone…

Yeah, I think the thing a lot of commenters are missing is that the medical field itself has a pretty bad history of telling people "it's all in your head" when there turned out to be specific, treatable biological causes. This is especially true for CFS, where for a long time it was seen not just to be psychosomatic, but actually "not really that bad." As another example, stress was blamed as the main cause of ulcer…

There is also HUGE amounts of money involved. Especially huge ramifications come to the fact that you could either have extra 10 billion dollars paid out to CFS claimants, or you could spend them on your pet projects....what would one with power to decide the outcome of that do...?

Only the good things, of course, because they are all angels.

Re: Online activists are silencing us, scientists say

#337

Post by dTal »

dataduck wrote: post #236
dTal wrote: post #168

Earlier quoted context omitted.

You know, I think science is a lot more capable of converting "is" into "ought" than it is commonly given credit for. I think there's room for a kind of "moral pragmatism". After all, our morals all came from somewhere - some type of reasoning drove their creation, be it conscious or evolutionary. There's a rock bottom, and science can expose contradictions between our core axiomatic beliefs, and our more shallow cac…

Is that a Newtonian moral imperative, a quantum moral imperative, or a relativistic moral imperative? Science can help optimise toward a pre-existing ought (the moral imperative not to kill, for example) but it has nothing to say about what should be a moral imperative in the first place.

Well, the point was that moral imperatives don't materialize out of nowhere. The question of why humans feel this way is a scientific one, not a moral one. So you can evaluate it, and its effects, in the context of whatever broader goal you're trying to achieve, be it a space-faring civilization, a happy civilization, or even just a surviving one. Most moral imperatives are cached thoughts, subordinate to larger imperatives. Most people can probably be convinced to kill, for example, if they think it's justified.

Re: Online activists are silencing us, scientists say

#338

Post by deadmik3 »

> Many researchers cite evidence that talking therapies and behavioural approaches can help in some cases. Yet some patients and their advocates say this amounts to a suggestion that the syndrome might be a mental illness or psychosomatic, a notion that enrages them. They would prefer that research efforts focus on identifying a biological cause or diagnosis.

this seems to be the case for many probably-psychosomatic issues in the modern age of tumblr self diagnoses

Re: Online activists are silencing us, scientists say

#339

Post by webXL »

dwaltrip wrote: post #315
webXL wrote: post #271

Earlier quoted context omitted.

How is this wildly off-topic if the subject of the article is online harassment of scientists, and climate change is specifically mentioned? The implied direction of the harassment might not be what the OP was talking about, but it's certainly related to the topic. As for the inflammatory bit, you might have a point there, but the kind of climate change that enabled humans to evolve might garner that fabled 97% of ba…

> How is this wildly off-topic if the subject of the article is online harassment of scientists, and climate change is specifically mentioned? I read the article and didn't notice it. Looking back, it was an offhand mention in a fragment of a single sentence. Clearly not the focus. > As for the inflammatory bit, you might have a point there, but the kind of climate change that enabled humans to evolve might garner th…

> Clearly not the focus.

But also not wildly off-topic. Every HN discussion brings in all sorts of viewpoints that make it more encompassing of the submission's focus. If something is tangentially related, it shouldn't be dismissed out of hand.

> No one is talking about that kind of climate change.

Um, they should be. How else would you answer the question what's the optimal climate if we're trying to mitigate change? Surely if it's not the current climate, then successfully changing the climate to the optimal conditions would be "good" climate change, right?

Re: Online activists are silencing us, scientists say

#340

Post by tome »

reitanqild wrote: post #179
Delmania wrote: post #67

Earlier quoted context omitted.

The more I learned the more terrifying that statement has become. The mind exerts incredible power of the body (and vice versa) and it's much harder to get rid of pain caused by a something in your brain than a cut or a broken leg.

Agree. This is kind of embarrasing as a grown up, an engineer and a soldier, but the brain can really prank some of us. (Edit: I guess it might be even worse as a doctor or nurse. My point is only that I consider myself a reasonable adult, not too easily scared.) My brain used to have my body act up when I took a certain medication. I was lucky: Once it got a little ahead of itself and my body started acting funny be…

> I was lucky: Once it got a little ahead of itself and my body started acting funny before I'd even taken the medication.

This is really interesting! I have a funny reaction to spicy foods: my scalp starts itching. I've notice that the itching can start even before eating when I merely have the spicy food in front of me and I'm anticipating eating it.

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