Online activists are silencing us, scientists say • Hacker News Board

Re: Online activists are silencing us, scientists say

#151

Post by dkersten » Wed, Mar 13, 2019, 2:52 PM UTC

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…

> 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 without a clear physical mechanism, such as RSI or chronic back pain) are psychosomatic.

I've had two RSI episodes in my life. The first one was similar to what you described and went away without any physical intervention, after I read something similar. The second (specifically, I had carpel tunnel syndrome symptoms) was more recently and didn't go away until I tried these: https://www.mijncarpaletunnel.nl/en/home They say to use them for 6 weeks. For about 4 weeks I didn't notice any change, but by the end of week 5 I was pain-free. They claim that you should remain pain-free for a couple of years after, which wasn't the case for me, I get some symptoms every so often (rarely pain, usually tingling fingers), but between using a Kinesis Advantage2 keyboard with foot pedals and taking regular breaks, its been manageable so far and hasn't caused any problems.

Re: Online activists are silencing us, scientists say

#152

Post by jvagner » Wed, Mar 13, 2019, 2:53 PM UTC

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.

honestly and earnestly, i also think a psychological condition that can (in most cases) be adjusted is taking society seriously. without a filter, and in some cases a firewall... "society" can also be the source of chronic pain.

Re: Online activists are silencing us, scientists say

#153

Post by [deleted] » Wed, Mar 13, 2019, 2:53 PM UTC

SolaceQuantum wrote: post #8

I'd like to comment here that this is primarily about chronic fatigue syndrome. There are other handwaving statements towards vaccines, global warming, and GMO, but none of those statements have a clear factual outlay. It's particularly interesting to me that it was implied that the activism against physical exercise/CBT to treat (not cure) chronic fatigue had done damage to the motivations of scientists to perform f…

[deleted]

Re: Online activists are silencing us, scientists say

#154

Post by dkersten » Wed, Mar 13, 2019, 2:55 PM UTC

SCdF wrote: post #110

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…

Just so there is a dissenting reply about Sarno's book, I have chronic RSI and his book did not help me at all. I wish it did, I'm pretty over RSI in general, but after going through a variety of different ideas and experiments pretty much "don't use your hands" is all I've got :-(

Give this a look: https://www.mijncarpaletunnel.nl/en/home I can't guarantee that it will work for you, but it helped me.

Re: Online activists are silencing us, scientists say

#155

Post by smudgymcscmudge » Wed, Mar 13, 2019, 2:55 PM UTC

Zelphyr wrote: post #139

drm237 wrote: post #122

Earlier quoted context omitted.

When people call your place of business and complain to your boss about your methods and mental state, when they lobby the government to open investigations into your research under the accusation of child abuse, and when they use every available method to discredit your life's work, I don't think that simply opting-out of Twitter is likely to make a meaningful difference unfortunately.

Seems like scientists at that point have little choice but to bring legal action against those activists for slander. Unfortunately, and apropos of your point, most scientists likely won't be that aggressive in their action and I think the activists know it.

I don’t think slander charges would work here unless the activists are lying about the scientists. Are there anti-harassment laws that could come into play? Much of the harassment probably crosses jurisdiction boarders, so it may be difficult to bring charges in many cases.

Re: Online activists are silencing us, scientists say

#156

Post by ip26 » Wed, Mar 13, 2019, 2:55 PM UTC

dkersten wrote: post #151

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…

> 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 without a clear physical mechanism, such as RSI or chronic back pain) are psychosomatic. I've had two RSI episodes in my life. The first one was similar to what you described and went away without any physical interventio…

1) Is it worse in your mouse hand? Don't overlook the mouse.

2) Is the KA2 wide enough for your shoulders? A split keyboard was the ticket for me, due to the set of my shoulders.

Re: Online activists are silencing us, scientists say

#157

Post by pjc50 » Wed, Mar 13, 2019, 2:56 PM UTC

gph wrote: post #120

pjc50 wrote: post #74

So there's basically three things going on here which need to be clarified. 1) People advocating alternative therapies stirring up trouble > "The campaigner and doctor behind MAIMES, Sarah Myhill, has posted YouTube videos setting out her views: “I liken it to child abuse,” she says in one that has been viewed more than 8,000 times. “This amounts to a form of abuse, because these people” – CFS/ME patients – “do not h…

>Given the interaction with disability benefits, having your disease declared to be in your head may result in the money you need to live being withdrawn. It's very high stakes. I didn't think a disease being mental ('all in your head') was relevant to disability? At least in the US I know people on disability because of mental illnesses.

I did say "may"; also, there's a very big difference between declaring someone's illness to be a "real" "recognised" mental illness, and declaring it to be "all in their head".

The UK system is particularly bad at finding spurious reasons to dismiss disability claims.

Re: Online activists are silencing us, scientists say

#158

Post by jmcqk6 » Wed, Mar 13, 2019, 2:57 PM UTC

cm2187 wrote: post #31

Another field where science is on a collision course with online (and offline) activists is genetics. As we decode and understand more of the genome, it is possible that our genes affect more of our behavior than what the partisans of tabula rasa hold for truth. And unless the political climate evolves, in a power struggle between activists and science, I wouldn't bet on the scientists.

If people are interested in exploring this topic, I would highly recommend Robert Sapolsky's course "Human Behavioral Biology" from stanford. The lectures are all available on YouTube and I learned so much from them:

https://www.youtube.com/watch?v=NNnIGh9g6fA&list=PL848F2368C...

Re: Online activists are silencing us, scientists say

#159

Post by erentz » Wed, Mar 13, 2019, 2:57 PM UTC

rfugger wrote: post #113

I have chronic fatigue syndrome since a bad viral infection in 2001. I find this article quite unfortunate. There is plenty of good research being done into CFS that does not generate the outrage that the PACE trial has. There are many reasons that particular study has been the focus of campaigners while other researchers are encouraged or left in peace, but I would encourage those who are coming to this issue here f…

Hi, fellow here who also meets the ME/CFS criteria. These articles in which Sharpe and Weasley pop up are always very disturbing because they cry “ow, poor me, the big mean activists are attacking science!!” And it’s surprisingly effective as seen in this thread. People assume they’re doing real science, and the activists are of the bad type.

But in this case it’s Sharpe and is colleagues that aren’t doing real science, they’ve done an abortion of a study full of holes, and it’s been used to cause harm to very ill people. Causing denied disability, forced exercise (which is contraindicated for ME/CFS), and do on. Their study has been torn to shreds by other real scientists but they refused to accept it and they call this response activism.

Sadly as we see here lay people even in tech are all too eager to lap up their claims.

Prof. Bruce Levin at Columbia even started using Sharpes and co’s PACE trial as a teaching example of all the bad things you can do to make a wrong study. (His slides were online but I’m having trouble find them right now.)

Another accessible article on the subject:

https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome...

Edit: here is Sharpes colleague Wesseley comparing people who refuse their PACE trial to climate change deniers and antivaxxers. Its entirely them who are refusing the science though because it shows they got it very wrong.

https://www.forbes.com/sites/julianvigo/2018/06/27/resistanc...

Re: Online activists are silencing us, scientists say

#160

Post by jmcqk6 » Wed, Mar 13, 2019, 2:59 PM UTC

pjc50 wrote: post #57

blattimwind wrote: post #23

> 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. The underlying stance (i.e. "psychosomatic and mental illness are no real illnesses") is so utterly moronic I am surprised they even found the tweet button.

> psychosomatic and mental illness are no real illnesses This is what people are told by medical professionals who are refusing to help them.

I'm not sure I'm following, so I want to make sure I've got this right. You are claiming that there are medical professionals are telling their patients that psychosomatic and mental illnesses are not real illnesses?