eladnarra's recent activity

  1. Comment on Should harder games have "Easy modes"? in ~games

    eladnarra Link
    This is interesting, I thought: Sekiro PC mod adds ‘easy mode,’ more graphical options. I wonder if the purists who are so against easy modes would be fine with a mod existing? I like the...

    This is interesting, I thought: Sekiro PC mod adds ‘easy mode,’ more graphical options. I wonder if the purists who are so against easy modes would be fine with a mod existing?

    I like the existence of easy or assist modes. I think when people talk about "challenge" as an integral part of a particular game, they ignore that people have different levels of skills, experience, and ability. Is the core experience of "challenge" in these games dying a whole lot and learning how to beat bosses through pattern recognition and well-timed dodges and hits? I'd likely die on medium/easy mode as much as a better player would on hard mode in that type of game, so an easy mode would maintain that aspect of challenge for me.

    The same is true for certain disabilities. If someone physically can't hit a button fast enough on a harder mode, slowing certain timings in an easy mode simply puts them on a similar playing field. They're still being challenged, and it is actually possible for them to play.

    1 vote
  2. Comment on Ban on single-use plastic items approved by European Parliament in ~enviro

    eladnarra Link
    Sucks for disabled people who rely on single-use plastic straws because of their particular characteristics. (Don't need cleaning, won't harbor bacteria, can be used in hot drinks, are bendable...

    Sucks for disabled people who rely on single-use plastic straws because of their particular characteristics. (Don't need cleaning, won't harbor bacteria, can be used in hot drinks, are bendable and positionable, don't trigger allergies, don't dissolve in drinks causing a choking hazard, are resistant to chewing, aren't dangerous if you bite down or make sudden movements, etc.)

    I tried to find some actual text of what was voted upon, but I was unable to. Are all plastic straws banned with no exceptions or contingencies?

    1 vote
  3. Comment on Online activists are silencing us, scientists say in ~science

    eladnarra Link Parent
    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.

    2 votes
  4. Comment on Online activists are silencing us, scientists say in ~science

    eladnarra Link Parent
    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.

    6 votes
  5. Comment on Online activists are silencing us, scientists say in ~science

    eladnarra Link Parent
    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.

    3 votes
  6. Comment on Online activists are silencing us, scientists say in ~science

    eladnarra Link Parent
    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.)

    4 votes
  7. Comment on Online activists are silencing us, scientists say in ~science

    eladnarra Link
    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...

    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.

    "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:

    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.

    19 votes
  8. Comment on Stop telling women to fix sexist workplaces in ~life

    eladnarra Link Parent
    Part of the issue for me (and it might just be me) is that when offtopic threads go for a while, each offtopic comment makes it seem like there's something new to be read about the original topic....

    Part of the issue for me (and it might just be me) is that when offtopic threads go for a while, each offtopic comment makes it seem like there's something new to be read about the original topic. So I click through expecting to read more discussion about the article, only to find a meta discussion that I don't have much interest in. It makes the activity sort and the new comment markings less helpful for finding things I'm interested in reading. (I'm not subscribed to the ~tildes group because I only like reading meta stuff in small doses.)

    Perhaps a minor thing, but I thought it was worth mentioning. And of course by commenting I replicate the problem, oops~

    4 votes
  9. Comment on Potential issues with catch-all terms for all non-white races? in ~talk

    eladnarra Link
    I use "POC" in conversations where it makes sense to group many people together. (Such as discussions about racism in general.) I don't think it separates or divides people; it seems to currently...

    I use "POC" in conversations where it makes sense to group many people together. (Such as discussions about racism in general.) I don't think it separates or divides people; it seems to currently be a helpful term when discussing issues that affect people who aren't white.

    That said, I'm white, so in the end I don't think my opinion on it matters that much. The terms that people are comfortable using for themselves and having others apply to them evolve over time, both on the individual level and the societal level. I use POC because it's the phrase I often see being used by folks when talking about themselves in these sorts of general discussions. And if that changes, I'll change too.

    --

    An aside: I've heard people express frustration at how "proper" vocab changes over time, whether it's for LGBT folks, POC, disabled people, etc. I don't have a lot of patience for their annoyance at having to learn a new word. I don't know much about how language changes, but I very much doubt it's to intentionally trick some white dude into making a mistake.

    For example, the swing back to identity first language ("disabled person") instead of person first language ('person with a disability") in many disability communities wasn't based on a whim. Some people prefer IFP because their disability is part of who they are (like some autistic folks). Others think that by insisting we put the "person first," we further stigmatize disability, as if abled people need reminding that disabled people are... people. These reasons (and I'm sure there are others) developed from people's relationships with their identities. And so when a group's vocab changes, it makes sense that the rest of us should follow suit (while also deferring to individual preferences when appropriate or possible).

    4 votes
  10. Comment on Bill Raising Federal Minimum Wage To $15 Heads To U.S. House Floor in ~news

    eladnarra Link Parent
    2024 seems so far in the future. I know things take time, but it makes me wonder what that actually will amount to after inflation if you compare it to $15 in 2012, when the "fight for 15"...

    It would raise the federal hourly minimum to $15 by 2024 and also phase out the so-called "subminimum" wages for tipped workers, young workers and workers with disabilities.

    2024 seems so far in the future. I know things take time, but it makes me wonder what that actually will amount to after inflation if you compare it to $15 in 2012, when the "fight for 15" movement started...

    Getting rid of the subminimum wage for disabled folks is good, though. It's nice to see that as a part of larger legislation rather than being considered a niche issue.

    1 vote
  11. Comment on To Build a Better Ballot — An Interactive Guide to Alternative Voting Systems in ~misc

    eladnarra Link Parent
    I've been a fan for ages, but somehow never came across their memory one! Thanks for linking it; I might check out the app, too, since I've found this sort of thing hard to put into practice on my...

    I've been a fan for ages, but somehow never came across their memory one! Thanks for linking it; I might check out the app, too, since I've found this sort of thing hard to put into practice on my own.

    1 vote
  12. Comment on Workism Is Making Americans Miserable in ~life

    eladnarra Link Parent
    Thanks - the stress of the system is very real, but the bizarre bonus of having a relatively poorly-understood condition is that there are periods where I don't have to deal with it because it...

    Thanks - the stress of the system is very real, but the bizarre bonus of having a relatively poorly-understood condition is that there are periods where I don't have to deal with it because it can't help much, haha.

    I'm in the US, and I'm definitely familiar with trying to optimize coverage/cost. I mostly manage to deal with it by making spreadsheets, but I can imagine it's very helpful to have someone help. (I once accidentally paid $500 extra for a couple MRIs because I didn't realize the location counted as hospital outpatient or something under my plan. Woops~)

    1 vote
  13. Comment on What products do you absolutely love? in ~talk

    eladnarra Link Parent
    No worries, thanks! I think I'm gonna pick up some different bulbs and try them out to see :)

    No worries, thanks! I think I'm gonna pick up some different bulbs and try them out to see :)

  14. Comment on Semi-Identical Twins Identified For Only The Second Time Ever in ~science

    eladnarra Link
    It's described correctly later on, but this paragraph is inaccurate: It should be three sets of chromosomes. The diagram shows how this was divided into three cells, but one set of cells was...

    It's described correctly later on, but this paragraph is inaccurate:

    The Brisbane twins are likely the result of one egg being fertilized by two sperm cells, resulting in three chromosomes. These three chromosomes were equally divided into two bunches of cells that then became two embryos.

    It should be three sets of chromosomes. The diagram shows how this was divided into three cells, but one set of cells was outcompeted. (My quick guess is that because it was from 2 sperm, it would have had improper genomic imprinting.)

    7 votes
  15. Comment on Workism Is Making Americans Miserable in ~life

    eladnarra Link Parent
    Very cool - some folks with chronic illnesses "joke" that dealing with the medical system is like having a part- (or even full-) time job. There should be more people out there actually doing it...

    Very cool - some folks with chronic illnesses "joke" that dealing with the medical system is like having a part- (or even full-) time job. There should be more people out there actually doing it as a job, helping take the pressure off people who are sick. (Assuming I'm understanding the scope of patient advocacy!)

    2 votes
  16. Comment on Workism Is Making Americans Miserable in ~life

    eladnarra Link
    It's weird to fall somewhere in the middle here. I was brought up surrounded by this mentality. I'm not sure if my parents particularly focused on it, but every time careers came up at school it...

    The economists of the early 20th century did not foresee that work might evolve from a means of material production to a means of identity production. They failed to anticipate that, for the poor and middle class, work would remain a necessity; but for the college-educated elite, it would morph into a kind of religion, promising identity, transcendence, and community. Call it workism.

    It's weird to fall somewhere in the middle here. I was brought up surrounded by this mentality. I'm not sure if my parents particularly focused on it, but every time careers came up at school it was about how to find your passion and what you're good at. I think I bought into it at the time. I was also something of a workaholic in school; perfectionism often requires it.

    Then I got sick and dropped out of high school. I finally have a college degree after over a decade, but I don't have the "luxury" throwing myself into a job (or graduate degree) that requires you to prove your passion by working overtime. I can work 20 hours a week, so now my only requirements for a job are part time, flexible hours and (hopefully one day) the ability to support myself. I'll find my fulfillment elsewhere, just as long as my job doesn't make me sicker.

    3 votes
  17. Comment on Would you pay higher taxes for better government services? in ~talk

    eladnarra Link Parent
    The costs incurred by those high spenders aren't frivolous, though; we're talking about things like drugs that literally keep people alive or able to function. When you target those costs in...

    The costs incurred by those high spenders aren't frivolous, though; we're talking about things like drugs that literally keep people alive or able to function. When you target those costs in particular and limit that medical care, people will suffer and die.

    Are you advocating denying care to people with complex and expensive medical conditions, when there are no less-expensive alternatives that will help them? Or am I missing your point?

    1 vote
  18. Comment on A Case For Why Labels Should Be Removed in ~tildes

  19. Comment on A Case For Why Labels Should Be Removed in ~tildes

    eladnarra Link Parent
    I think part of the design ethos on Tildes is to use words rather than symbols (not sure where that is mentioned). While it's possible for people to learn what the highlight color means, a word is...

    I think part of the design ethos on Tildes is to use words rather than symbols (not sure where that is mentioned). While it's possible for people to learn what the highlight color means, a word is easier to understand initially.

    Also, relying on color alone to denote meaning doesn't follow accessibility best practices; I doubt it gets picked up by screen readers, and depending on the theme the different colors might not be easily distinguished by folks who are colorblind.

    3 votes