So... I'm coming at this from a different perspective than I imagine most readers here on Tildes would. On the one hand, I studied biology in undergrad, and I want to support scientific research...
Exemplary
So... I'm coming at this from a different perspective than I imagine most readers here on Tildes would. On the one hand, I studied biology in undergrad, and I want to support scientific research in all areas.
On the other hand, I have CFS.
I've not participated in writing to (or about) CFS researchers, but I have dealt with the fallout of studies on CBT and GET (graded exercise therapy). Luckily I have a CFS specialist now, at a clinic that is doing biomedical research into the immune system, autonomic nervous system, and biomarkers, but when I first fell ill I encountered plenty of doctors who told me that all I needed to do was go back to school, try some antidepressants, and start moving again. I went from an average teenager to being unable to walk without my knees buckling, so tired I could barely eat dinner, my brain unable to remember a sentence I'd already read twice. Even light activity made me exhausted for days afterwards, and this was well before any "deconditioning" would have reasonably occurred.
There is a reason that CFS patients are angry at research into GET and CBT - we've tried it, and it made us worse. Not only that, the time and energy people spend trying to figure out how to cure us with therapy and exercise is time and energy that isn't going into researching the weird things our immune systems and autonomic nervous system do. And when advisory organizations like the CDC and NICE/NHS support these treatments, that's what doctors will prescribe, to the detriment of patients.
Absolutely nothing justifies threats and harassment. However, by focusing on the harassment rather than the more measured reactions and criticisms from CFS patients, this article paints us all as deluded or hysterical. It also skims over the PACE trial entirely:
Published in The Lancet medical journal in 2011, the results found that cognitive behavioural therapy – designed to help patients change their thinking and behaviour – and graded exercise therapy – in which patients are encouraged to start from very low levels of daily activity and then incrementally raise them – are safe and moderately effective treatments for some people.
[...]
His argument is that the therapies evaluated in the PACE trial are based on a misguided hypothesis that CFS/ME patients suffer from “unhelpful” beliefs that they have a biological disease, and that their symptoms of fatigue are made worse by deconditioning due to inactivity. He also says he thinks the trial’s methodology was flawed. The scientists involved reject those arguments.
Before the trial of 641 patients began, the researchers had announced their standards for success — that is, what “improvement” and “recovery” meant in statistically measurable terms. To be considered recovered, participants had to meet established thresholds on self-assessments of fatigue and physical function, and they had to say they felt much better overall.
But after the unblinded trial started, the researchers weakened all these standards, by a lot. Their revised definition of “recovery” was so loose that patients could get worse over the course of the trial on both fatigue and physical function and still be considered “recovered.” The threshold for physical function was so low that an average 80-year-old would exceed it.
In addition, the only evidence the researchers had that patients felt better was that patients said so. They found no significant improvement on any of their objective measures, such as how many patients got back to work, how many got off welfare, or their level of fitness.
Just to highlight the most damning part: "Their revised definition of “recovery” was so loose that patients could get worse over the course of the trial on both fatigue and physical function and still be considered “recovered.”" How is that remotely good science?
And it's not just CFS patients who find issue with this very major study. From the same article I quoted above:
Racaniello and 41 other scientists and clinicians published an open letter to the Lancet calling for an independent investigation into the trial and saying “such flaws have no place in published research.” Rebecca Goldin, the director of Stats.org, an organization that works to improve the use of statistics in journalism, eviscerated the trial’s design in a 7,000-word critique.
[...]
Just before releasing the data,Queen Mary University of London did its own re-analysis on the question of how many patients got better, at least a little bit. Their data showed that using the study’s original standards, only 20 percent of patients improved with cognitive behavior therapy or exercise in addition to medical care, not 60 percent as claimed in the Lancet.
And even the 20 percent figure might be misleading, because the re-analysis also found that 10 percent of participants improved after receiving only standard medical care. That suggests that 10 percent in each of the treatment groups would likely have improved even without the exercise or therapy, leaving only 10 percent who were significantly helped by those interventions.
As for the claim that 22 percent of patients who received either treatment made an actual recovery? That went up in smoke when Matthees analyzed the raw data with the help of his colleagues and statisticians Philip Stark of the University of California, Berkeley, and Bruce Levin of Columbia University.
Their analysis showed that had the researchers stuck to their original standards, only 4.4 percent of the exercise patients and 6.8 percent of the cognitive behavior therapy patients would have qualified as having recovered, along with 3.1 percent of patients in a trial arm that received neither therapy.
Importantly, there was no statistically significant difference between these recovery rates.
So... yeah. There's a reason people are angry, and while that never justifies threats or harassment, this particular article is missing a pretty big part of the story.
I think the article is more about the kind of responses rather than the research and proposed remedies itself. I mean, it could be replaced with a totally different research area and controversial...
I think the article is more about the kind of responses rather than the research and proposed remedies itself. I mean, it could be replaced with a totally different research area and controversial finding, the problem addressed is the fact that there is this sort of reaction that obstructs science and scientists.
But the only reason the researchers are being harassed (which again, isn't warranted or okay) is because they are putting out poorly executed studies that are used to support treatments that harm...
But the only reason the researchers are being harassed (which again, isn't warranted or okay) is because they are putting out poorly executed studies that are used to support treatments that harm patients and take attention and resources away from research that could actually help. So... the research and proposed treatments are relevant. CFS "activists" support research, just not research that continues to perpetuate harmful ideas and make people sicker. They do plenty to support other research and try to get funding, as paltry as it is.
The thing that obstructs research into CFS is lack of funding and the harmful idea that it can be fixed with exercise and therapy. As long as that is the type of research being paid attention to, despite its methodological errors, research in other areas will stagnate.
According to the article, though, some patients have been helped by CBT and GET. Even if that's a minority, doesn't it indicate that more research is warranted? And if the primary research paper...
According to the article, though, some patients have been helped by CBT and GET. Even if that's a minority, doesn't it indicate that more research is warranted? And if the primary research paper into those therapies is flawed, then there certainly should be further research. And besides that, even if you take the results of the PACE trial at face value, it doesn't mean that other avenues of research are closed off. It seems to me that if you think that psychological therapy is a dead end, then you should support studies that could confirm your belief. Every scientific breakthrough is built on a thousand failures. That means that researchers need to have the freedom to fail. Do what you can to encourage research that you think is a winner, but extinguishing research because you think it's a loser seems counterproductive.
Studies like PACE aren't received as indicating one avenue for future research, though. They are used almost immediately as the support for treatment guidelines (because there are no other...
According to the article, though, some patients have been helped by CBT and GET. Even if that's a minority, doesn't it indicate that more research is warranted? And if the primary research paper into those therapies is flawed, then there certainly should be further research.
Studies like PACE aren't received as indicating one avenue for future research, though. They are used almost immediately as the support for treatment guidelines (because there are no other mainstream proposed treatments). So the CDC and NICE/NHS put CBT and GET as their main suggestions for every primary care physician and specialist to read, even though it doesn't work for a large number of patients and makes many worse.
My relapses when I pushed myself too much lasted months. For some people they lasted years, or are still going. We're talking about real harm that's mostly unacknowledged by these types of studies. It's very possible that what we call CFS now is actually a wide range of related or similar-looking conditions, and that CBT and GET work for one subset while being useless or detrimental for others. But we won't know that, can't know that, as long as the only research being done is "does therapy and exercise work?" We don't know enough about the actual physical causes of CFS to know if we need to separate patients into groups, let alone what metrics to use to do so.
And besides that, even if you take the results of the PACE trial at face value, it doesn't mean that other avenues of research are closed off. It seems to me that if you think that psychological therapy is a dead end, then you should support studies that could confirm your belief.
The issue is that funding in science is limited. For example, nearly a decade after I was diagnosed, the NIH gave $5 million per year to CFS research. This is for an illness that affects likely 1 million people in the US alone, some so severely that they are bed- or housebound. In 2017, CFS got $15 million, so it's getting better very slowly, in part thanks to the work of researchers and CFS activists, but that still falls well below the amount of funding received by other diseases with similar levels of severity, disability, and prevalence. So when a large portion of limited money goes to the same types of CBT/GET studies that we've been seeing for decades, instead of to biomedical research aimed at figuring out what's wrong with us, it's intensely frustrating.
Because that's the thing - I still don't know what's wrong with me. None of us do. We have some weird test results, some interesting, disparate findings in studies about NK cells, cytokines, oxidative stress in the brain, metabolic dysfunction, lower anaerobic thresholds on repeat testing, orthostatic intolerance, gut microbiomes, etc. I support all of those studies - hell, I go to a clinic doing research, so I'm probably a deidentified piece of data in of some of them.
Every scientific breakthrough is built on a thousand failures. That means that researchers need to have the freedom to fail.
The problem here is that Sharpe won't even admit that PACE was a failure, despite the methodological issues and subsequent reanalysis by other researchers showing little to no significance. Some of the blowback he got was harassment, and I don't blame him for being put off by it and wanting to hightlight it as a problem, but some of the feedback was very measured and came from people in his and related fields. Yet he appears to dismiss all criticism, regardless of the source. If a scientist cannot take criticism of their work, that's a big problem. You can only build upon failures if you admit you made one.
i feel like you could use this justification to explain away literally any medical experiment though, even if it's at the logical extreme of being utterly superfluous, doing little to advance our...
Every scientific breakthrough is built on a thousand failures. That means that researchers need to have the freedom to fail. Do what you can to encourage research that you think is a winner, but extinguishing research because you think it's a loser seems counterproductive.
i feel like you could use this justification to explain away literally any medical experiment though, even if it's at the logical extreme of being utterly superfluous, doing little to advance our human knowledge, and basically just being an excuse to torture people like was the case with many nazi and imperial japanese medical experiments during world war 2. researchers do need the freedom to fail, but at what point do we say that the branch of research being undertaken is causing an unacceptable amount of harm to people and just needs to stop? is the hand transplant method we have currently still okay for example because a few people benefited, but most others who undertook it have either died from complications, had to have their transplants undone because of complications, or are worried about the possibility of developing complications? was thalidomide still in the acceptable range of failure for a branch of scientific research even though it completely fucked an entire subset of people and their children? i just don't buy that it's quite as clear cut as you're presenting it, nor should it be.
I am always sceptic of most activism because it is naturally prone to groupthink and (metaphorical) lynching, which might quite easily (and not rarely if not often) be based on misinterpretations....
Exemplary
I am always sceptic of most activism because it is naturally prone to groupthink and (metaphorical) lynching, which might quite easily (and not rarely if not often) be based on misinterpretations.
For example, I never liked #MeToo, because it not only checked all these boxes, but also propagated a culture of online accusations that are hard or impossible to fact check. And it did not help with the fact that the biggest fault is on the culture and legislation that help sexual predators harass and violate people with little or no consequences, annihilation of which is at least as important as penalisation of the individual attackers, given it is what fabricates and protects them. OTOH, Sci Hub is the kind of activism that is spot on, that has concrete benefits, and has made actual change happen. Elbakyan (my true hero!) showed us what we were missing out on because of greedy gatekeeping exploitators, and has empowered thus the Open Access movement.
Still, though, it has required a scientist go illegal, and is not a conclusive solution to the problem. And there are potential negative effects, like (involuntarily) legitimising other sorts of pirating which harms creative people of all sorts.
We need a better way of influencing political issues. Activism is prone to abuse, like in this case, or antivaxx, or other post-truth lynch mobs fed by ignorant fury and angst.
Back when I was doing some pro-queer community work in a very anti-queer place, I had a mentor who helped me navigate the complex landscape. He was older, much more experienced, and wise in the...
Exemplary
Back when I was doing some pro-queer community work in a very anti-queer place, I had a mentor who helped me navigate the complex landscape. He was older, much more experienced, and wise in the ways of what we were doing.
Nevertheless, we butted heads over some of our events and demonstrations. While some of what he wanted to do was brilliant, I also found some of his ideas deliberately inflammatory or outright hostile. I'm of the philosophy that you get more flies with honey, so I would balk when he would suggest more aggressive campaigns. They seemed to run counter to our goals. Wouldn't we drive people away? Wouldn't it damage relationships?
He then said something that stuck with me: "activism isn't for them," he told me, "it's for us." The point of something inflammatory or outrageous wasn't to convince anyone of anything. That was the work of advocacy. Activism, instead, was meant to rally us. Inflame our passions and make ourselves known. Make others out there know that they are not alone. By forcing the issue and forcing ourselves to be heard, we would have reach that advocacy wouldn't have alone.
Unfortunately, it comes at the cost of decency and decorum. If I'm engaging in activism, I am, by default, choosing to transgress norms. We show that an issue is significantly important to us by breaking the status quo, and we consider any damage done by our direct action to be secondary to the damage we are trying to correct in the first place. Activism is fundamentally messy.
Advocacy, on the other hand, is more measured and tactical. It's the reaching and the teaching. With advocacy you don't want to inflame others, as you're largely targeting people either impartial or outright hostile to your position in the first place. It's much more about rhetoric and framing than it is about bombast. It requires nuance, emotional intelligence, and the ability to build relationships.
I liked the advocacy we did. I did not like the activism. Nevertheless, under my mentor's guidance I engaged with both. I don't know if his dichotomy of advocacy vs. activism is a commonly accepted one, but it's the framework that I carry with me to this day. And, even though I do not consider myself an activist, I better understand now that his strategy was a careful balancing of the two. He lived through the AIDS crisis, and his playbook came straight from there. It's easy to look at slow-moving, thoughtful advocacy as the way forward, but that's an easy position to take when time is on your side and the sides of those you love.
In hindsight, he helped me appreciate that there is a need for both. Advocacy without activism can be passionless and glacial. It can constrain a movement to only be seen by those who care to look for it. Activism without advocacy, on the other hand, is a flash in the pan. It's all retch and no vomit. All the pomp and circumstance but none of the graduation.
The internet, soundbites, and, above all, Twitter, are the perfect breeding grounds for activism. You can be quippy, provocative, and you can find your us. Or, moreover, they can find you. Twitter is a social network for protest signs. This is not a problem in and of itself, but Twitter and much of the internet are outright terrible for advocacy. Advocacy doesn't respond well to character limits and facelessness. It doesn't respond well to tribalism and cliques.
But activism cannot sustain a movement on its own. In fact, it can become dangerous when it's the only tool used. Being on the receiving end of activism can be frustrating (often by design). If those frustrations are not softened by the relationship building and understanding of advocacy, it can calcify into resentment. Activism can also do harm in unexpected ways--collateral damage for those untargeted by its often imprecise swings.
If I could inelegantly summarize where "we" are as an internet, I would say that we are beleaguered. A lot of it is from activism, but not all of it. This is deeper than just one tool. There are plenty of other issues: increasing individualism and wide (justified) loss of faith in authorities are two just off the top of my head. I'm certain there are more.
An indefinable number of factors have coalesced to cause people to be resentful and frustrated. We're resentful of the other side because we're constantly made aware of their aggressions but we've done nothing to connect--not just across lines of difference but even with people on "our side!" We mistake connection for agreement. If I make a hot political take on Twitter and get a bunch of retweets and favorites, I have done nothing to connect with anyone else, but it's so easy to mistake those digital pats on the back for something genuine.
Something I'm trying to relearn with Tildes is how to type something honest, earnest, and potentially flawed. I'm so jaded and guarded from years of internet comment battles that I feel like I have to put up either something bulletproof or something tactically sympathetic enough that it'll disarm people. It's an internalized intellectual dishonesty at this point. Too often I simply say nothing for fear of a fight.
And while I tend to fold inward at the potential for conflict, there are those who do the opposite. They lean in. Conflict for them is either invigorating for its drama, or its something to be won. Taking someone down feels good because it's productive. They've advanced their cause! It's direct action. It feels good. It galvanizes you and yours.
The internet hides the costs in this scenario. It turns off damage numbers and hides health bars in the HUD. Activism in person at least causes you to come face to face with the people you impact. You see them just as they see you. Online, however, you don't have to face down anyone but your followers. If you're successful, it's all win--no lose! Silence carries weight in person but is invisible online, so you'll never notice if your words sting. Especially not when there's a noisy cheering section mashing the like and retweet buttons.
I don't know what the solution is, but I'm hoping we can figure it out. I want to be able to come online, be online, and connect online without feeling like I'm on a battleground. I want the people I interact with to feel equally comfortable. I want us to chat and talk and even argue, but the kind of arguing that's inquisitive rather than destructive. I want more reaching and teaching and less vindictive callouts and pithy clapbacks.
You said that we need a better way of influencing political issues. With the way I see things, I would argue that we need more advocacy and less activism.
Thank you for this long, insightful response! Amen. But... Both advocacy and activism can be abused, i.e. used for bad, or misinformed (or both) purposes. The example in the original article is...
Exemplary
Thank you for this long, insightful response!
You said that we need a better way of influencing political issues. With the way I see things, I would argue that we need more advocacy and less activism.
Amen. But...
Both advocacy and activism can be abused, i.e. used for bad, or misinformed (or both) purposes. The example in the original article is misinformed activism. I don't assume malintent, b/c it is people claiming to have the illness, which I did not really know about, which presumably react to this research b/c they believe it is belittling, as they are somehow convinced that the said research reduces their grave physiological problems to psychological issues. The activism here blocks the channels for communication and alienates those who want to help, both the scientists, and the advocacy. The activism is probably (emphasising to mean that it is a guess) founded on emotional reactions and ignorant readings of the science. It is also a part of a culture, which I can name as "outrage culture", where a group of activists act upon a shared, ossified dogma. It is similar to antivaxx, the chemtrails. Maybe anti-abortion/pro-life activism can be put near these. But here also advocacy is used for foul purposes. Lots of rhetoric and convincing goes on, especially online, to recruit people into these extremely harmful gangs of idiocy.
Gender issues are different. Basically any person who is/was not a religious, healthy, strong, somewhat agressive heterosexual male (let's call this the Man) has been ostracised and/or faced violence, psychological or physical, legal or societal. And then, the Man is no good either, it is a collective of mutual and constant violence. There is not only a need to acquire rights and respect, but also to gain a guarantee of safety. So some sort of activism and clustering is necessary (and I say that as a person who, for himself, opposes any sort of membership of any identity or philosophical category / group). I have had a chance to observe how feminist groups help, however flawed or not their theoretical tendencies and practices (I mean the properties of individual groups, not feminism in general) may be, the factual concrete help they provide to victims of misogynist violence is substantial, and is desperately needed.
These issues confuse me because I am an epicurean type that likes to go into his intellectual cave, and live in the world as if it was a hostile landscape that I should navigate carefully to be safe, believing that making a change before the natural tipping point for it comes is almost completely impossible. But there is evidence that that approach is flawed, and there are concrete and positive gains from activism, and concrete and negative outcomes of advocacy out there (edit: also the inverse). These are tools we have, but maybe what we lack is (and I mean that maybe, I am not hiding a well-informed generalism behind it, but telling my true gut feeling, so to speak, at this moment) more exposure? Maybe we should come together more? Maybe we should teach the failures of us at schools more often than we teach Galileian or Einsteinian moments of glory so that we learn that most ideas, traditions, superstitions, etc. often fail, and maybe then people would learn that it is more productive and enjoyable to not be die-hard fans or fighters, but instead curious individuals with an objective eye and open mind; leading to people more easily accepting intellectual failure and changing themselves as a result of a realisation of a mistaken belief? I don't know. I'd love to be the prophet that has the divine answer to the question: how can we end all the witch hunting and fandom and get everyone to be more open minded, objective, and loving? I hope and believe (in the truest sense of the word, as in holding a well-intentioned but poorly investigated view) that we'll get there, or somewhere near; but I lack the answer how.
I don't participate in harassment so I can't speak to the motivation behind it, but I do understand where the anger comes from. If you're interested in why one person with CFS doesn't like this...
I don't assume malintent, b/c it is people claiming to have the illness, which I did not really know about, which presumably react to this research b/c they believe it is belittling, as they are somehow convinced that the said research reduces their grave physiological problems to psychological issues.
I don't participate in harassment so I can't speak to the motivation behind it, but I do understand where the anger comes from. If you're interested in why one person with CFS doesn't like this research, my comment is below. I'm also open to answering questions.
My comment also links to an article that goes over the criticisms of the PACE trial, which I personally don't think are "founded on emotional reactions and ignorant readings of the science," especially since many of them have be brought up by scientists. I'd be interested if your opinion on changes based on that. Obviously nothing excuses harassment, but I think the article does a disservice to the less vitriolic CFS patients.
EDIT: ah, sorry, I see you just replied to my comment when I was writing this one.
I was generally commenting on the abuse part of it. Sorry if that was not obvious. Patients and other scientists reacting constructively to a certain idea in a field is totally healthy scientific...
I was generally commenting on the abuse part of it. Sorry if that was not obvious. Patients and other scientists reacting constructively to a certain idea in a field is totally healthy scientific activity.
Culture and legislation fixes can only come from people revealing those issues to the greater world. What solution would you have, other than people remaining silent and maintaining the status quo?
Culture and legislation fixes can only come from people revealing those issues to the greater world. What solution would you have, other than people remaining silent and maintaining the status quo?
A solution to this is something I think about. Remaining silent is not a solution, and I do not suggest or want that. Nor maintaining status quo. But the way we voice our troubles and the ways our...
A solution to this is something I think about. Remaining silent is not a solution, and I do not suggest or want that. Nor maintaining status quo. But the way we voice our troubles and the ways our societies are broken is important. Not all those ways lead to good, and some of those that indeed lead to good require too many sacrifices and/or harm in the meantime.
One thing that is a low hanging fruit in this regard is a more dialogue based approach, instead of a more contentious one. One story that really inspires me is that of Daryl Davis, who converted 200 KKK members just by befriending them, and introducing them, through himself, as a black man, to the alterity they demonised and attacked. Different problems would require different solutions. I believe one of the components of the solution to gender problems will be a more promiscuous society. As women, queer, and people from other underrepresented groups will appear more and be successful, the exposure will help a lot. Actually, it's been helping a lot already, but we're still counting "first woman/LGBT+ to ..."; soon, it'll become the new normal, and the rest will follow. I hope.
But there is no one thing that will solve everything, or even most problems in their individuality. Society is complex. But I'm hopeful that the better will come, if we work, instead of fight, for it. We can fight Weinstein or Trump or Darth Vader, but we can not fight traditions and other stuff that lives in the subconscious; we can only work our way (relatively) slowly towards eradicating it. Only then there is victory.
This is a good article, and even though it focuses on one specific topic (research of CFS/ME), this is absolutely a larger problem that I don't know if we're going to fully understand the effects...
This is a good article, and even though it focuses on one specific topic (research of CFS/ME), this is absolutely a larger problem that I don't know if we're going to fully understand the effects of for a long time. There's a chilling effect happening in a huge variety of different fields, described well by this quote in the article:
Attempts to limit, undermine or manipulate evidence based results, pressure or intimidate researchers into or away from any given conclusions, will ultimately have a negative effect. It will only lead to those researchers choosing to work in other areas and reduce the resources dedicated to providing the help patients so desperately need.
It's something that I think about myself fairly often. Choosing to work in online communities means that I'm effectively volunteering to put up with routine harassment, threats, etc. I'm extremely accustomed and jaded towards it at this point, but I still can't pretend that it has no impact on me, and a lot of other people have it far worse than I ever have. Unless someone is extremely devoted to what they're working on, it's pretty difficult to justify why you'd want to keep putting up with all the harassment when you could just go work on something else instead where that isn't a factor.
It's happening in science, medicine, technology (especially related to social media), entertainment (especially gaming), and more. A lot of smart, talented people that could contribute to all of these fields are being driven away to other ones because they don't want to make dealing with online mobs part of their life.
That article you linked about game dev abuse has moved me deeply. I feel sorry for the folks. There are some games I really hate and think that are a mess (PES is one, it is just badly put...
That article you linked about game dev abuse has moved me deeply. I feel sorry for the folks. There are some games I really hate and think that are a mess (PES is one, it is just badly put together), but going from disliking to play them or maybe cussing while playing them to actually insulting developers themselves or threatening them or blinking doxxing and stalking them IRL is a huge jump which I don't believe anybody in their right mind can take. These people are simply mentally ill, not even ignorant or rude or rough. I wonder what is allowing them this much of entitlement though.
It is aw{esome,ful} how much power and impotence internet has brought about into any sort of public interaction: on the one hand, anybody can easily say something to the whole world (I mean that theoretically, but that's practically possible too), on the other, every person doing so is potentially placing themselves under the focus of the entire world. That means that if you put in the effort to create, there is no time/space limit to your potential audience, but also that you open yourself up to an equally vast (but hopefully not equally numerous, but potentially so) spectrum of abusers. Moreover, the same tool, the WWW, is an as good an amplifier for the evil as it is for the good. The misinformation-mongers, the e-lynch-mobs, the botified-abusers, the freeloaders, the doxxers, and this and that.
I wonder if we'll ever find a technological solution to exclude these miserable beings, or will we have to just wait as the human race will become mature enough to not shit right into the middle of every good and beautiful thing that exists.
I'm not familiar with the particular researcher being quoted here, but I would like to point out that the criticisms of Sharpe's research were about the PACE study's methodology and potential...
Attempts to limit, undermine or manipulate evidence based results, pressure or intimidate researchers into or away from any given conclusions, will ultimately have a negative effect. It will only lead to those researchers choosing to work in other areas and reduce the resources dedicated to providing the help patients so desperately need.
I'm not familiar with the particular researcher being quoted here, but I would like to point out that the criticisms of Sharpe's research were about the PACE study's methodology and potential conflicts of interest. These didn't just come from CFS "activists," but also scientists and statisticians. This quote from the article makes it sound as if there's no way criticism of certain CFS research could be valid, which is troubling. Scientific studies can be poorly executed or outright wrong, and in wider contexts they can contribute to harmful stereotypes or beliefs.
Plus, from a personal perspective, as a CFS patient I'm okay with psychologists moving away from CFS research. My experience, the experiences of other patients, and the biomedical research being done all point to some sort of systemic medical issue, not a fear of exercise or deconditioning due to an initial illness. After the PACE study, I have no faith in Sharpe; even if mental health is a contributing factor for some patients, I don't believe that he is the right person to do that research. (That said, threats and harassment are obviously bad. People have a right to be angry about poor or misleading studies that slow research progress and harm patients, but that doesn't excuse hurting other people in response.)
Equating the 'regressive left' with the 'alt-right' seems massively disingenuous, considering the 'regressive-left' hardly exists in America and the term itself is primarily used by proponents on...
Equating the 'regressive left' with the 'alt-right' seems massively disingenuous, considering the 'regressive-left' hardly exists in America and the term itself is primarily used by proponents on the alt-right nowadays.
So... I'm coming at this from a different perspective than I imagine most readers here on Tildes would. On the one hand, I studied biology in undergrad, and I want to support scientific research in all areas.
On the other hand, I have CFS.
I've not participated in writing to (or about) CFS researchers, but I have dealt with the fallout of studies on CBT and GET (graded exercise therapy). Luckily I have a CFS specialist now, at a clinic that is doing biomedical research into the immune system, autonomic nervous system, and biomarkers, but when I first fell ill I encountered plenty of doctors who told me that all I needed to do was go back to school, try some antidepressants, and start moving again. I went from an average teenager to being unable to walk without my knees buckling, so tired I could barely eat dinner, my brain unable to remember a sentence I'd already read twice. Even light activity made me exhausted for days afterwards, and this was well before any "deconditioning" would have reasonably occurred.
There is a reason that CFS patients are angry at research into GET and CBT - we've tried it, and it made us worse. Not only that, the time and energy people spend trying to figure out how to cure us with therapy and exercise is time and energy that isn't going into researching the weird things our immune systems and autonomic nervous system do. And when advisory organizations like the CDC and NICE/NHS support these treatments, that's what doctors will prescribe, to the detriment of patients.
Absolutely nothing justifies threats and harassment. However, by focusing on the harassment rather than the more measured reactions and criticisms from CFS patients, this article paints us all as deluded or hysterical. It also skims over the PACE trial entirely:
"Methodology was flawed" is a vague, and by glossing over it in a single sentence it would lead the reader to believe that it's hyperbole, or untrue. But here's a description of just one of the methodological flaws found:
Just to highlight the most damning part: "Their revised definition of “recovery” was so loose that patients could get worse over the course of the trial on both fatigue and physical function and still be considered “recovered.”" How is that remotely good science?
And it's not just CFS patients who find issue with this very major study. From the same article I quoted above:
So... yeah. There's a reason people are angry, and while that never justifies threats or harassment, this particular article is missing a pretty big part of the story.
I think the article is more about the kind of responses rather than the research and proposed remedies itself. I mean, it could be replaced with a totally different research area and controversial finding, the problem addressed is the fact that there is this sort of reaction that obstructs science and scientists.
But the only reason the researchers are being harassed (which again, isn't warranted or okay) is because they are putting out poorly executed studies that are used to support treatments that harm patients and take attention and resources away from research that could actually help. So... the research and proposed treatments are relevant. CFS "activists" support research, just not research that continues to perpetuate harmful ideas and make people sicker. They do plenty to support other research and try to get funding, as paltry as it is.
The thing that obstructs research into CFS is lack of funding and the harmful idea that it can be fixed with exercise and therapy. As long as that is the type of research being paid attention to, despite its methodological errors, research in other areas will stagnate.
According to the article, though, some patients have been helped by CBT and GET. Even if that's a minority, doesn't it indicate that more research is warranted? And if the primary research paper into those therapies is flawed, then there certainly should be further research. And besides that, even if you take the results of the PACE trial at face value, it doesn't mean that other avenues of research are closed off. It seems to me that if you think that psychological therapy is a dead end, then you should support studies that could confirm your belief. Every scientific breakthrough is built on a thousand failures. That means that researchers need to have the freedom to fail. Do what you can to encourage research that you think is a winner, but extinguishing research because you think it's a loser seems counterproductive.
Studies like PACE aren't received as indicating one avenue for future research, though. They are used almost immediately as the support for treatment guidelines (because there are no other mainstream proposed treatments). So the CDC and NICE/NHS put CBT and GET as their main suggestions for every primary care physician and specialist to read, even though it doesn't work for a large number of patients and makes many worse.
My relapses when I pushed myself too much lasted months. For some people they lasted years, or are still going. We're talking about real harm that's mostly unacknowledged by these types of studies. It's very possible that what we call CFS now is actually a wide range of related or similar-looking conditions, and that CBT and GET work for one subset while being useless or detrimental for others. But we won't know that, can't know that, as long as the only research being done is "does therapy and exercise work?" We don't know enough about the actual physical causes of CFS to know if we need to separate patients into groups, let alone what metrics to use to do so.
The issue is that funding in science is limited. For example, nearly a decade after I was diagnosed, the NIH gave $5 million per year to CFS research. This is for an illness that affects likely 1 million people in the US alone, some so severely that they are bed- or housebound. In 2017, CFS got $15 million, so it's getting better very slowly, in part thanks to the work of researchers and CFS activists, but that still falls well below the amount of funding received by other diseases with similar levels of severity, disability, and prevalence. So when a large portion of limited money goes to the same types of CBT/GET studies that we've been seeing for decades, instead of to biomedical research aimed at figuring out what's wrong with us, it's intensely frustrating.
Because that's the thing - I still don't know what's wrong with me. None of us do. We have some weird test results, some interesting, disparate findings in studies about NK cells, cytokines, oxidative stress in the brain, metabolic dysfunction, lower anaerobic thresholds on repeat testing, orthostatic intolerance, gut microbiomes, etc. I support all of those studies - hell, I go to a clinic doing research, so I'm probably a deidentified piece of data in of some of them.
The problem here is that Sharpe won't even admit that PACE was a failure, despite the methodological issues and subsequent reanalysis by other researchers showing little to no significance. Some of the blowback he got was harassment, and I don't blame him for being put off by it and wanting to hightlight it as a problem, but some of the feedback was very measured and came from people in his and related fields. Yet he appears to dismiss all criticism, regardless of the source. If a scientist cannot take criticism of their work, that's a big problem. You can only build upon failures if you admit you made one.
i feel like you could use this justification to explain away literally any medical experiment though, even if it's at the logical extreme of being utterly superfluous, doing little to advance our human knowledge, and basically just being an excuse to torture people like was the case with many nazi and imperial japanese medical experiments during world war 2. researchers do need the freedom to fail, but at what point do we say that the branch of research being undertaken is causing an unacceptable amount of harm to people and just needs to stop? is the hand transplant method we have currently still okay for example because a few people benefited, but most others who undertook it have either died from complications, had to have their transplants undone because of complications, or are worried about the possibility of developing complications? was thalidomide still in the acceptable range of failure for a branch of scientific research even though it completely fucked an entire subset of people and their children? i just don't buy that it's quite as clear cut as you're presenting it, nor should it be.
I am always sceptic of most activism because it is naturally prone to groupthink and (metaphorical) lynching, which might quite easily (and not rarely if not often) be based on misinterpretations.
For example, I never liked #MeToo, because it not only checked all these boxes, but also propagated a culture of online accusations that are hard or impossible to fact check. And it did not help with the fact that the biggest fault is on the culture and legislation that help sexual predators harass and violate people with little or no consequences, annihilation of which is at least as important as penalisation of the individual attackers, given it is what fabricates and protects them. OTOH, Sci Hub is the kind of activism that is spot on, that has concrete benefits, and has made actual change happen. Elbakyan (my true hero!) showed us what we were missing out on because of greedy gatekeeping exploitators, and has empowered thus the Open Access movement.
Still, though, it has required a scientist go illegal, and is not a conclusive solution to the problem. And there are potential negative effects, like (involuntarily) legitimising other sorts of pirating which harms creative people of all sorts.
We need a better way of influencing political issues. Activism is prone to abuse, like in this case, or antivaxx, or other post-truth lynch mobs fed by ignorant fury and angst.
Back when I was doing some pro-queer community work in a very anti-queer place, I had a mentor who helped me navigate the complex landscape. He was older, much more experienced, and wise in the ways of what we were doing.
Nevertheless, we butted heads over some of our events and demonstrations. While some of what he wanted to do was brilliant, I also found some of his ideas deliberately inflammatory or outright hostile. I'm of the philosophy that you get more flies with honey, so I would balk when he would suggest more aggressive campaigns. They seemed to run counter to our goals. Wouldn't we drive people away? Wouldn't it damage relationships?
He then said something that stuck with me: "activism isn't for them," he told me, "it's for us." The point of something inflammatory or outrageous wasn't to convince anyone of anything. That was the work of advocacy. Activism, instead, was meant to rally us. Inflame our passions and make ourselves known. Make others out there know that they are not alone. By forcing the issue and forcing ourselves to be heard, we would have reach that advocacy wouldn't have alone.
Unfortunately, it comes at the cost of decency and decorum. If I'm engaging in activism, I am, by default, choosing to transgress norms. We show that an issue is significantly important to us by breaking the status quo, and we consider any damage done by our direct action to be secondary to the damage we are trying to correct in the first place. Activism is fundamentally messy.
Advocacy, on the other hand, is more measured and tactical. It's the reaching and the teaching. With advocacy you don't want to inflame others, as you're largely targeting people either impartial or outright hostile to your position in the first place. It's much more about rhetoric and framing than it is about bombast. It requires nuance, emotional intelligence, and the ability to build relationships.
I liked the advocacy we did. I did not like the activism. Nevertheless, under my mentor's guidance I engaged with both. I don't know if his dichotomy of advocacy vs. activism is a commonly accepted one, but it's the framework that I carry with me to this day. And, even though I do not consider myself an activist, I better understand now that his strategy was a careful balancing of the two. He lived through the AIDS crisis, and his playbook came straight from there. It's easy to look at slow-moving, thoughtful advocacy as the way forward, but that's an easy position to take when time is on your side and the sides of those you love.
In hindsight, he helped me appreciate that there is a need for both. Advocacy without activism can be passionless and glacial. It can constrain a movement to only be seen by those who care to look for it. Activism without advocacy, on the other hand, is a flash in the pan. It's all retch and no vomit. All the pomp and circumstance but none of the graduation.
The internet, soundbites, and, above all, Twitter, are the perfect breeding grounds for activism. You can be quippy, provocative, and you can find your us. Or, moreover, they can find you. Twitter is a social network for protest signs. This is not a problem in and of itself, but Twitter and much of the internet are outright terrible for advocacy. Advocacy doesn't respond well to character limits and facelessness. It doesn't respond well to tribalism and cliques.
But activism cannot sustain a movement on its own. In fact, it can become dangerous when it's the only tool used. Being on the receiving end of activism can be frustrating (often by design). If those frustrations are not softened by the relationship building and understanding of advocacy, it can calcify into resentment. Activism can also do harm in unexpected ways--collateral damage for those untargeted by its often imprecise swings.
If I could inelegantly summarize where "we" are as an internet, I would say that we are beleaguered. A lot of it is from activism, but not all of it. This is deeper than just one tool. There are plenty of other issues: increasing individualism and wide (justified) loss of faith in authorities are two just off the top of my head. I'm certain there are more.
An indefinable number of factors have coalesced to cause people to be resentful and frustrated. We're resentful of the other side because we're constantly made aware of their aggressions but we've done nothing to connect--not just across lines of difference but even with people on "our side!" We mistake connection for agreement. If I make a hot political take on Twitter and get a bunch of retweets and favorites, I have done nothing to connect with anyone else, but it's so easy to mistake those digital pats on the back for something genuine.
Something I'm trying to relearn with Tildes is how to type something honest, earnest, and potentially flawed. I'm so jaded and guarded from years of internet comment battles that I feel like I have to put up either something bulletproof or something tactically sympathetic enough that it'll disarm people. It's an internalized intellectual dishonesty at this point. Too often I simply say nothing for fear of a fight.
And while I tend to fold inward at the potential for conflict, there are those who do the opposite. They lean in. Conflict for them is either invigorating for its drama, or its something to be won. Taking someone down feels good because it's productive. They've advanced their cause! It's direct action. It feels good. It galvanizes you and yours.
The internet hides the costs in this scenario. It turns off damage numbers and hides health bars in the HUD. Activism in person at least causes you to come face to face with the people you impact. You see them just as they see you. Online, however, you don't have to face down anyone but your followers. If you're successful, it's all win--no lose! Silence carries weight in person but is invisible online, so you'll never notice if your words sting. Especially not when there's a noisy cheering section mashing the like and retweet buttons.
I don't know what the solution is, but I'm hoping we can figure it out. I want to be able to come online, be online, and connect online without feeling like I'm on a battleground. I want the people I interact with to feel equally comfortable. I want us to chat and talk and even argue, but the kind of arguing that's inquisitive rather than destructive. I want more reaching and teaching and less vindictive callouts and pithy clapbacks.
You said that we need a better way of influencing political issues. With the way I see things, I would argue that we need more advocacy and less activism.
Thank you for this long, insightful response!
Amen. But...
Both advocacy and activism can be abused, i.e. used for bad, or misinformed (or both) purposes. The example in the original article is misinformed activism. I don't assume malintent, b/c it is people claiming to have the illness, which I did not really know about, which presumably react to this research b/c they believe it is belittling, as they are somehow convinced that the said research reduces their grave physiological problems to psychological issues. The activism here blocks the channels for communication and alienates those who want to help, both the scientists, and the advocacy. The activism is probably (emphasising to mean that it is a guess) founded on emotional reactions and ignorant readings of the science. It is also a part of a culture, which I can name as "outrage culture", where a group of activists act upon a shared, ossified dogma. It is similar to antivaxx, the chemtrails. Maybe anti-abortion/pro-life activism can be put near these. But here also advocacy is used for foul purposes. Lots of rhetoric and convincing goes on, especially online, to recruit people into these extremely harmful gangs of idiocy.
Gender issues are different. Basically any person who is/was not a religious, healthy, strong, somewhat agressive heterosexual male (let's call this the Man) has been ostracised and/or faced violence, psychological or physical, legal or societal. And then, the Man is no good either, it is a collective of mutual and constant violence. There is not only a need to acquire rights and respect, but also to gain a guarantee of safety. So some sort of activism and clustering is necessary (and I say that as a person who, for himself, opposes any sort of membership of any identity or philosophical category / group). I have had a chance to observe how feminist groups help, however flawed or not their theoretical tendencies and practices (I mean the properties of individual groups, not feminism in general) may be, the factual concrete help they provide to victims of misogynist violence is substantial, and is desperately needed.
These issues confuse me because I am an epicurean type that likes to go into his intellectual cave, and live in the world as if it was a hostile landscape that I should navigate carefully to be safe, believing that making a change before the natural tipping point for it comes is almost completely impossible. But there is evidence that that approach is flawed, and there are concrete and positive gains from activism, and concrete and negative outcomes of advocacy out there (edit: also the inverse). These are tools we have, but maybe what we lack is (and I mean that maybe, I am not hiding a well-informed generalism behind it, but telling my true gut feeling, so to speak, at this moment) more exposure? Maybe we should come together more? Maybe we should teach the failures of us at schools more often than we teach Galileian or Einsteinian moments of glory so that we learn that most ideas, traditions, superstitions, etc. often fail, and maybe then people would learn that it is more productive and enjoyable to not be die-hard fans or fighters, but instead curious individuals with an objective eye and open mind; leading to people more easily accepting intellectual failure and changing themselves as a result of a realisation of a mistaken belief? I don't know. I'd love to be the prophet that has the divine answer to the question: how can we end all the witch hunting and fandom and get everyone to be more open minded, objective, and loving? I hope and believe (in the truest sense of the word, as in holding a well-intentioned but poorly investigated view) that we'll get there, or somewhere near; but I lack the answer how.
I don't participate in harassment so I can't speak to the motivation behind it, but I do understand where the anger comes from. If you're interested in why one person with CFS doesn't like this research, my comment is below. I'm also open to answering questions.
My comment also links to an article that goes over the criticisms of the PACE trial, which I personally don't think are "founded on emotional reactions and ignorant readings of the science," especially since many of them have be brought up by scientists. I'd be interested if your opinion on changes based on that. Obviously nothing excuses harassment, but I think the article does a disservice to the less vitriolic CFS patients.
EDIT: ah, sorry, I see you just replied to my comment when I was writing this one.
I was generally commenting on the abuse part of it. Sorry if that was not obvious. Patients and other scientists reacting constructively to a certain idea in a field is totally healthy scientific activity.
Culture and legislation fixes can only come from people revealing those issues to the greater world. What solution would you have, other than people remaining silent and maintaining the status quo?
A solution to this is something I think about. Remaining silent is not a solution, and I do not suggest or want that. Nor maintaining status quo. But the way we voice our troubles and the ways our societies are broken is important. Not all those ways lead to good, and some of those that indeed lead to good require too many sacrifices and/or harm in the meantime.
One thing that is a low hanging fruit in this regard is a more dialogue based approach, instead of a more contentious one. One story that really inspires me is that of Daryl Davis, who converted 200 KKK members just by befriending them, and introducing them, through himself, as a black man, to the alterity they demonised and attacked. Different problems would require different solutions. I believe one of the components of the solution to gender problems will be a more promiscuous society. As women, queer, and people from other underrepresented groups will appear more and be successful, the exposure will help a lot. Actually, it's been helping a lot already, but we're still counting "first woman/LGBT+ to ..."; soon, it'll become the new normal, and the rest will follow. I hope.
But there is no one thing that will solve everything, or even most problems in their individuality. Society is complex. But I'm hopeful that the better will come, if we work, instead of fight, for it. We can fight Weinstein or Trump or Darth Vader, but we can not fight traditions and other stuff that lives in the subconscious; we can only work our way (relatively) slowly towards eradicating it. Only then there is victory.
This is a good article, and even though it focuses on one specific topic (research of CFS/ME), this is absolutely a larger problem that I don't know if we're going to fully understand the effects of for a long time. There's a chilling effect happening in a huge variety of different fields, described well by this quote in the article:
It's something that I think about myself fairly often. Choosing to work in online communities means that I'm effectively volunteering to put up with routine harassment, threats, etc. I'm extremely accustomed and jaded towards it at this point, but I still can't pretend that it has no impact on me, and a lot of other people have it far worse than I ever have. Unless someone is extremely devoted to what they're working on, it's pretty difficult to justify why you'd want to keep putting up with all the harassment when you could just go work on something else instead where that isn't a factor.
It's happening in science, medicine, technology (especially related to social media), entertainment (especially gaming), and more. A lot of smart, talented people that could contribute to all of these fields are being driven away to other ones because they don't want to make dealing with online mobs part of their life.
That article you linked about game dev abuse has moved me deeply. I feel sorry for the folks. There are some games I really hate and think that are a mess (PES is one, it is just badly put together), but going from disliking to play them or maybe cussing while playing them to actually insulting developers themselves or threatening them or blinking doxxing and stalking them IRL is a huge jump which I don't believe anybody in their right mind can take. These people are simply mentally ill, not even ignorant or rude or rough. I wonder what is allowing them this much of entitlement though.
It is aw{esome,ful} how much power and impotence internet has brought about into any sort of public interaction: on the one hand, anybody can easily say something to the whole world (I mean that theoretically, but that's practically possible too), on the other, every person doing so is potentially placing themselves under the focus of the entire world. That means that if you put in the effort to create, there is no time/space limit to your potential audience, but also that you open yourself up to an equally vast (but hopefully not equally numerous, but potentially so) spectrum of abusers. Moreover, the same tool, the WWW, is an as good an amplifier for the evil as it is for the good. The misinformation-mongers, the e-lynch-mobs, the botified-abusers, the freeloaders, the doxxers, and this and that.
I wonder if we'll ever find a technological solution to exclude these miserable beings, or will we have to just wait as the human race will become mature enough to not shit right into the middle of every good and beautiful thing that exists.
I'm not familiar with the particular researcher being quoted here, but I would like to point out that the criticisms of Sharpe's research were about the PACE study's methodology and potential conflicts of interest. These didn't just come from CFS "activists," but also scientists and statisticians. This quote from the article makes it sound as if there's no way criticism of certain CFS research could be valid, which is troubling. Scientific studies can be poorly executed or outright wrong, and in wider contexts they can contribute to harmful stereotypes or beliefs.
Plus, from a personal perspective, as a CFS patient I'm okay with psychologists moving away from CFS research. My experience, the experiences of other patients, and the biomedical research being done all point to some sort of systemic medical issue, not a fear of exercise or deconditioning due to an initial illness. After the PACE study, I have no faith in Sharpe; even if mental health is a contributing factor for some patients, I don't believe that he is the right person to do that research. (That said, threats and harassment are obviously bad. People have a right to be angry about poor or misleading studies that slow research progress and harm patients, but that doesn't excuse hurting other people in response.)
Equating the 'regressive left' with the 'alt-right' seems massively disingenuous, considering the 'regressive-left' hardly exists in America and the term itself is primarily used by proponents on the alt-right nowadays.