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

Re: Online activists are silencing us, scientists say

#361

Post by PACE-trial » Wed, Mar 13, 2019, 8:12 PM UTC

mc32 wrote: post #5

This is sad. Unfortunately we have some people who put their beliefs and politics above science and will actively act against investigation only because a line of inquiry could result in evidence against their view. It comes from both the left and right depending on the topic. It’s not simply dissent it also is about pressuring institutions to not fund certain areas of investigation which is a very detrimental conseq…

I think this article is sad because it gives readers such as yourself such a misleading understanding of the issue.

The article implies it is 'scientists' vs 'activists'. Yet many more scientists have spoken out against the PACE trial than it its favour, eg: http://www.virology.ws/2018/08/13/trial-by-error-open-letter...

It implies that the 'activists' reject results for ideological reasons, rather than because the research being challenged includes verifiably false claims, statistical spin and poor methodology: https://journals.sagepub.com/doi/full/10.1177/13591053177223...

No mention is made of the fact that when an information tribunal had to examine claims about these researchers being harassed and abused their judgement stated that claims about activist behaviour had been "grossly exaggerated": https://www.centreforwelfarereform.org/news/major-breaktn-pa...

When data from the PACE trial was forced out by this legal process it showed that using the trials prespecified outcomes undermined key claims from the trial researchers: https://www.tandfonline.com/doi/abs/10.1080/21641846.2017.12...

It is disappointing to see so many people seeming to uncritically accept a media smear campaign.

Re: Online activists are silencing us, scientists say

#362

Post by sosodev » Wed, Mar 13, 2019, 8:18 PM UTC

skywhopper wrote: post #145

sosodev wrote: post #138

Earlier quoted context omitted.

What are they going to call and complain about if you don't have a social media account for them to dig through?

If you didn’t read the article, these activists are digging through research papers, finding the researchers’ contact info, and harassing them directly. On Twitter when they are on Twitter, but also on the phone and through the mail, and via their employers. This has nothing to do with whether or not the researchers themselves are on Twitter. The mob that’s harassing them uses social media to organize and recruit.

I did read the article. I guess I should have phrased it differently. The employers of these researchers already know what they're researching. They understood the risks involved so what would it matter if somebody calls in?

If the researcher removes themselves from social media they're insulated from the outrage in multiple layers. They don't see it, and they're not leaving any of their personal actions behind to be complained about.

Re: Online activists are silencing us, scientists say

#363

Post by phonypc » Wed, Mar 13, 2019, 8:34 PM UTC

sleepysysadmin wrote: post #352

phonypc wrote: post #328

Earlier quoted context omitted.

Nah. If you had sincerely posted something critical of climate change (on a more relevant article) that wasn't nonsensical at first sight, and were downvoted without being responded to, then sure. Call HN an echo chamber. But you were just being a contrarian troll.

>Nah. If you had sincerely posted something critical of climate change (on a more relevant article) that wasn't nonsensical at first sight, and were downvoted without being responded to, then sure. Call HN an echo chamber. No accusations needed. HN is far less likely to be an echo chamber on these subjects; which is why I had to pull a big gun out like climate change; which was referenced multiple times in the articl…

The article does not talk about climate change in depth. It briefly mentions climate skepticism as an example of "Social media platforms have supercharged battles over scientific evidence" and implicitly compares it to the CFS activism which is the subject of the article, as well as anti-vaccine and anti-GMO activism.

Proving the point of the article with respect to climate change would have involved posting the consensus view, and that starting a toxic discussion. But you just made a toxic post from the get-go.

Re: Online activists are silencing us, scientists say

#364

Post by yyyyip » Wed, Mar 13, 2019, 8:46 PM UTC

Emma_Goldman wrote: post #222

ddorian43 wrote: post #114

Earlier quoted context omitted.

See anyone who has touched "differences of iq between races".

Natural selection acts to increase the fitness of a species relative to its environment. In the human case 'race' is a misnomer. It simply refers to certain features of humans' external appearance, namely melanin. But this does not track any distinct genetic community, which primarily changes as a function of the total sum of environmental pressures, and not just in proportion to UV radiation (i.e. as is true of mela…

Ok, so if "race" only affects external appearance, explain why every single london marathon champion since 2002 is kenyan or ethiopian?

Re: Online activists are silencing us, scientists say

#365

Post by PACE-trial » Wed, Mar 13, 2019, 8:46 PM UTC

elefanten wrote: post #303

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…

What about the empirical evidence of thousands of patients who have had success with these therapies? Is it possible their experience shows it's not as simple as declaring PACE completely proves or disproves the psycho/somatic vector?

There's thought to be a natural rate of recovery of around 5%, so there will be many people who recovered while co-incidentally doing all manner of things, CBT, GET, homeopathy, etc. There's no good evidence that CBT or GET help people recover. Even relying on just subjective self-report questionnaires prone to problems with bias, the PACE trial's prespecified recovery criteria showed that there was no significant improvement in recovery rates when CBT and GET were added to patients' medical care: https://www.tandfonline.com/doi/abs/10.1080/21641846.2017.12...

Re: Online activists are silencing us, scientists say

#366

Post by doctorpangloss » Wed, Mar 13, 2019, 8:47 PM UTC

btilly wrote: post #344

doctorpangloss wrote: post #290

Earlier quoted context omitted.

It’s way more complicated than that. The diagnostic criteria changes over time, for many diseases with psychological components, in ways that make formerly pathological behaviors now healthy and vice versa. Placebo doesn’t actually help you, obviously, despite what the outcome you’re measuring suggests. It represents a slack (something not quite an error, but not quite a useful measurement) in the outcomes based meas…

You're right that changes in diagnostic criteria and statistical effects can cause a placebo group to look better or worse over time without the placebo having done anything. This is important, and thank you for the reminder. However that is not to say that the placebo effect never helps you. As http://protomag.com/articles/the-placebo-problem shows, people who are receiving a placebo will experience medically signif…

Yes, I agree. I think my point really is that clinical outcomes care about how the patient feels, while scientific outcomes (like whether your medicine works the way you think it does) usually does not.

We got a lot of great medicine whose biomechanics we don’t really understand and whose trials don’t prove but definitely safely and significantly help people. A study just seeking to prove that your drug does the biomechanics it claims measures a placebo effect of zero if it is done correctly, because if you observe a placebo effect you’re not dealing with a biomechanically constrained outcome anymore.

There isn’t really a viable alternative to evidence based medicine, it’s the only game in town. We just have to carefully decide what outcomes we care about and whether or not those outcomes (1) discourage scientific understanding of the underlying biomechanics of our drugs, by virtue of making black-boxedness acceptable and (2) are co-opted, via enemy action, by either conspiracy theorists sowing doubt in things like vaccines or moneyed interests who make mediocre drugs look good.

Re: Online activists are silencing us, scientists say

#367

Post by leftyted » Wed, Mar 13, 2019, 8:53 PM UTC

Emma_Goldman wrote: post #222

ddorian43 wrote: post #114

Earlier quoted context omitted.

See anyone who has touched "differences of iq between races".

Natural selection acts to increase the fitness of a species relative to its environment. In the human case 'race' is a misnomer. It simply refers to certain features of humans' external appearance, namely melanin. But this does not track any distinct genetic community, which primarily changes as a function of the total sum of environmental pressures, and not just in proportion to UV radiation (i.e. as is true of mela…

This comment doesn't make sense to me. Like all words, "race" has different meanings, i.e. it can be defined in different ways.

Race can, and has, been defined in a way that is useful to scientists. "Biological races" are different populations of the same species that meet some threshold of genetic variability with respect to each other. When populations are isolated for a long time, this is inevitable.

Re: Online activists are silencing us, scientists say

#368

Post by LinuxBender » Wed, Mar 13, 2019, 9:22 PM UTC

I can see both sides of this. Having read most of nih.gov /PubMed, it is easy to see how some research can easily be classified as paid advertisements. They are quite easy to spot once you have read through enough research. Telltale signs are a lack of prerequisites, lack of reproducible methods, lack of test subjects, lack of funding references, lack of email addresses. Some folks have even found it rather easy to get fake research papers published without anyone having actually vetting the data. So in summary, I believe some of the blame falls on the scientific community for not doing a better job policing itself and making it easier to report pseudo-research to moderators using a publicly transparent methodology.

In terms of the patients getting frustrated with a lack of acknowledgment of their issues, I believe that is due to a misconception about the medical industry. It is very rare to find doctors that will "color outside the lines", so to speak. If a medical condition is not well documented and accepted by the medical industry and insurance companies, then a doctor is risking a journey down a rabbit hole and risking the patient being frustrated without having a clear path to a treatment (for symptoms or a cure). It is frustrating for everyone involved, but I don't think this is something that medical professionals can do anything about. I have no idea what the right path is. For my own issues, I have considered starting forums for scientists and biohackers to share findings, but I am just lazy and busy enough to kick that can down the road.

Re: Online activists are silencing us, scientists say

#369

Post by Emma_Goldman » Wed, Mar 13, 2019, 9:33 PM UTC

yyyyip wrote: post #364

Emma_Goldman wrote: post #222

Earlier quoted context omitted.

Natural selection acts to increase the fitness of a species relative to its environment. In the human case 'race' is a misnomer. It simply refers to certain features of humans' external appearance, namely melanin. But this does not track any distinct genetic community, which primarily changes as a function of the total sum of environmental pressures, and not just in proportion to UV radiation (i.e. as is true of mela…

Ok, so if "race" only affects external appearance, explain why every single london marathon champion since 2002 is kenyan or ethiopian?

There's no consensus as to the answer to that question. But even if we accept the genetic accounts offered, the explanation would be that certain Ethiopian and Kenyan tribes living in mountainous areas have adapted to living at high altitudes by adapting to increase the efficiency of their oxygen uptake, which, in turn, makes them better long-distance runners. That has nothing to do with melanin, or even with being Kenyan or Ethiopian, but with a localised adaptation to environment. But again - we can only speculate, no one know's the answer.

Re: Online activists are silencing us, scientists say

#370

Post by Emma_Goldman » Wed, Mar 13, 2019, 9:39 PM UTC

leftyted wrote: post #367

Emma_Goldman wrote: post #222

Earlier quoted context omitted.

Natural selection acts to increase the fitness of a species relative to its environment. In the human case 'race' is a misnomer. It simply refers to certain features of humans' external appearance, namely melanin. But this does not track any distinct genetic community, which primarily changes as a function of the total sum of environmental pressures, and not just in proportion to UV radiation (i.e. as is true of mela…

This comment doesn't make sense to me. Like all words, "race" has different meanings, i.e. it can be defined in different ways. Race can, and has, been defined in a way that is useful to scientists. "Biological races" are different populations of the same species that meet some threshold of genetic variability with respect to each other. When populations are isolated for a long time, this is inevitable.

'"Biological races" are different populations of the same species that meet some threshold of genetic variability with respect to each other. When populations are isolated for a long time, this is inevitable.'

As you must know, the ordinary understanding of race is based upon external appearance, primarily melanin: black, white, yellow, brown, Indian, and so on. If you redefine race as a genetic population, then you will end up with new population categories that have absolutely nothing to do with race as it is ordinarily understood, i.e. as I just pointed out on this thread, it is possible (though I don't know how likely) that certain tribes living at high altitude in Kenya and Ethiopia have adapted to increase the efficiency of their oxygen uptake. But that would be a localised adaptation to environment, not a general feature of 'black' people, or even of Kenyans and Ethiopians.