tag:blogger.com,1999:blog-4002090569667317956.post8547099582514630974..comments2023-07-16T03:00:42.402-07:00Comments on The Kafka Pandemic: Make it unthinkable, pleaseSamuel Waleshttp://www.blogger.com/profile/11141951571229527898noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-4002090569667317956.post-30221700105654897892016-02-10T10:22:25.705-08:002016-02-10T10:22:25.705-08:00Hi Anonymous,
Insightful point about downplaying ...Hi Anonymous,<br /><br />Insightful point about downplaying reality.<br /><br />I agree MS per-capita funding is too low. There's also the need to make up for the many years that we needed to have science done but did not. And scientist perception that needs radical fixing -- by science. And a bunch of other reasons we need to raise our sights.<br /><br />I'd like us to consider the unthinkable disease to compare to: HIV/AIDS.<br /><br />PR is a valuable forum with good people (clearly including The Almighty Pill and you, to judge by the high quality of the comments by both of you) and good analysis. So I'd like to know more about any moderation control.<br /><br />Anonymous, please be pseudonymous or use your name. My readers and I want to know if you're the same person from comment to comment. "Name/URL" is enabled so you can enter a name; "Anonymous" cannot be turned off without turning that off also. I prefer to know who you are in the community, but I don't insist on it.<br />Samuel Waleshttps://www.blogger.com/profile/11141951571229527898noreply@blogger.comtag:blogger.com,1999:blog-4002090569667317956.post-70914743577741776392016-01-23T18:31:04.116-08:002016-01-23T18:31:04.116-08:00I do think that patients feel constrained to not r...I do think that patients feel constrained to not report certain symptoms. Initially, I thought my most severe symptoms would be the most likely to result in my doctors considering my condition serious. I thought discussing every symptom - including my most horrifying ones - would mean that doctors would have a better chance at diagnosis and treatment. <br /><br />This was the opposite of true. The sicker I was during the appointment, and the more severe the symptoms I discussed, the more likely the physician was to behave as though what I was telling them could not possibly be true. Not only was the correlation easy to see personally - even with the same doctor, visit-to-visit - there is a study that shows that in illnesses the physician has trouble understanding, the worse the patient appears to be feeling, the less likely the doctor is to accept that the patient's symptoms are real. <br /><br />Fascinating and horrifying.<br /><br />I find myself talking about my worst symptoms in oblique terms and my minor to moderate symptoms more specifically. It's the way I get the most reliable care I can.<br /><br />I feel that my altered behavior is what you are describing here, in miniature. We are well aware that our symptoms are *unthinkable* for such a 'simple' and 'minor' illness. We try to be grateful to be moving forward, because some movement is better than none at all. We're trying to appease popular opinion by squeezing ourselves into an image of the illness that doesn't describe our experience in the slightest.<br /><br />I'm fascinated by your focus on what reality would look like if chronic, denigrated illness were treated properly. The obvious answer is to have as much research funding for each of them as for MS -- more, since there is already medication for MS that is approved by the establishment as being effective. Certainly, any system that promoted the biopsychosocial model of illness would be denied public funding immediately. We've long since reached the point where it has become clear that proponents of such models are actively obstructionist to biological research, to the point of fervor. Not only are their studies laughably poor, they've refused to give up their data to the public... which is like having a large building collapse in public and refusing to present the blueprints! <br /><br />If the law found that the government was accountable to patients who had been harmed by unorthodox therapies, there would be reparations, specifically in the few remaining countries in which physicians have been actively encouraged to consider these sorts of illnesses psychosomatic. Part of those funds would go to a public relations campaign aimed at education around the illness. This would include fees for speakers at medical conferences to dispel any remaining misconceptions.<br /><br />Getting any country's government to admit it was wrong seems pretty nonsensical in our bureaucratic realm. For some reason, I find the funding business actually possible, though.<br /><br />Regarding the forum PR, I'm a member as well. I haven't observed this censorious and dictatorial behavior personally, but I find that the 'character' of the boards differs greatly depending on where you tend to spend your time.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4002090569667317956.post-16251661676493902612016-01-11T21:54:49.441-08:002016-01-11T21:54:49.441-08:00Hi TheAlmightyPill,
Thank you.
You make a lot of...Hi TheAlmightyPill,<br /><br />Thank you.<br /><br />You make a lot of good points!<br /><br />Let's talk about them more.<br /><br />Samuel Waleshttps://www.blogger.com/profile/11141951571229527898noreply@blogger.comtag:blogger.com,1999:blog-4002090569667317956.post-617761742558787062016-01-09T12:07:01.081-08:002016-01-09T12:07:01.081-08:00Hi Samuel,
Great blog, and glad to see some new e...Hi Samuel,<br /><br />Great blog, and glad to see some new entries!<br /><br />I think one very important concept in relation to the Overton Window and the idea of "unthinkability" is that of "controlled opposition." <br /><br />A major role of true opposition is to force "extreme" or "unthinkable" ideas into the public consciousness and thereby pressure the Overton Window to shift in time. (Think: severity, progression, etc). By controlling this role, the viewpoints "on stage" can be managed so as to never threaten any substantive change.<br /><br />The CAA (CFIDS Association of America) is a prime example of controlled opposition. They serve only to dilute and derail ideas that could endanger the status quo (or "alienate those trying to help us" in their deliberately milquetoast verbiage).<br /><br />The Phoenix Rising forum embodies a similar concept, one that might be called "controlled exchange." As a long-time member there (under a different name), it clearly maintains a double-standard in moderation. Certain "unthinkable" ideas and conversations are rapidly scuttled by a stable of status quo gatekeepers, backed by the heavy hand of moderation. Likewise, non-neutered criticism of consensus opinion is quickly shut down. The result is an appearance of thriving exchange, but one constrained to irrelevant and status quo-preserving topics. <br /><br />A key point is that the creation and maintenance of such "controlled" entities doesn't require a grand evil plan. Merely a self-sustaining culture and outlook inherently amenable to the status quo. Powerful, intansigent institutions will naturally seek out and popularly promote opposition forces least likely to impact their operations. A closed loop of revolving door policies and human weakness (egoism, power-craving, etc) organically sustains the system.<br /><br />Therefore, as you alluded to in your post, we must be very diligent in evaluating (and continually re-evaluating) our purported leaders and advocates. Playing nice is "thinkable." Gatekeeping is "thinkable." Garnering goodwill and status is "thinkable."<br /><br />Refusing to play on any terms but our own is the first step to "unthinkable."TheAlmightyPillnoreply@blogger.comtag:blogger.com,1999:blog-4002090569667317956.post-27213637057545418972015-12-07T14:15:41.537-08:002015-12-07T14:15:41.537-08:00Hi Shelley,
Very good to hear from you!
Almost a...Hi Shelley,<br /><br />Very good to hear from you!<br /><br />Almost all of my posts have taken years or months to write. I am glad to get this one out as I think it might be timely.<br />Samuel Waleshttps://www.blogger.com/profile/11141951571229527898noreply@blogger.comtag:blogger.com,1999:blog-4002090569667317956.post-92109294623227501892015-12-07T14:01:33.011-08:002015-12-07T14:01:33.011-08:00I've been wondering how you are. Very glad to...I've been wondering how you are. Very glad to see you blogging! ShelleyMEshelhttps://www.blogger.com/profile/05236565935788031795noreply@blogger.comtag:blogger.com,1999:blog-4002090569667317956.post-73189375693188463322015-12-07T10:49:25.090-08:002015-12-07T10:49:25.090-08:00Hi Dancingstarheart,
Thanks for reading my blog. ...Hi Dancingstarheart,<br /><br />Thanks for reading my blog. Definitely it is time!<br />Samuel Waleshttps://www.blogger.com/profile/11141951571229527898noreply@blogger.comtag:blogger.com,1999:blog-4002090569667317956.post-33033535292412283392015-12-07T06:58:18.620-08:002015-12-07T06:58:18.620-08:00So very enjoyed this article. Both Kafka and Wond...So very enjoyed this article. Both Kafka and Wonderland have been themes is my life since becoming ill. So enjoyed this article on the unthinkable. We need to start believing the unthinkable, the impossible.<br /><br />"Why, sometimes I've believed as many as six impossible things before breakfast."<br />Lewis Carroll, Alice in Wonderland (Alice's Adventures in Wonderland, #1)Anonymoushttps://www.blogger.com/profile/03450375239243431300noreply@blogger.comtag:blogger.com,1999:blog-4002090569667317956.post-88331570227683137082015-11-30T10:36:45.688-08:002015-11-30T10:36:45.688-08:00Christian, I very much like your idea that thinkin...Christian, I very much like your idea that thinking can be limited in both directions!<br />Samuel Waleshttps://www.blogger.com/profile/11141951571229527898noreply@blogger.comtag:blogger.com,1999:blog-4002090569667317956.post-67013564141598528192015-11-30T10:35:36.540-08:002015-11-30T10:35:36.540-08:00Some highly relevant data:
2015 US HIV/AIDS fundi...Some highly relevant data:<br /><br />2015 US HIV/AIDS funding is $30,700,000,000 ($30.7 billion). Likewise, obama's 2016 request is $31,700,000,000 ($31.7 billion).<br /><br />Of the latter, 9% ($2.8 billion) is for NIH research. But that is not all. In addition, 20% of the $31.7 billion is for global funding, including international research.<br /><br />As for services, we can mention the Ryan White program, which provides services to people with HIV. Its funding is $2.3 billion.<br /><br />There's more.<br />Samuel Waleshttps://www.blogger.com/profile/11141951571229527898noreply@blogger.comtag:blogger.com,1999:blog-4002090569667317956.post-16251258931287923572015-11-20T16:45:43.364-08:002015-11-20T16:45:43.364-08:00Hi Christian,
Thanks for your comment.
Yes, we h...Hi Christian,<br /><br />Thanks for your comment.<br /><br />Yes, we have logic on our side like no other group I am aware of.<br />Samuel Waleshttps://www.blogger.com/profile/11141951571229527898noreply@blogger.comtag:blogger.com,1999:blog-4002090569667317956.post-68510844921782071852015-11-20T15:58:57.467-08:002015-11-20T15:58:57.467-08:00There are two "unthinkables" outside the...There are two "unthinkables" outside the Overton window: one below and one above. Though that is not their intended meaning, for the issue at hand I like to see them as one being the unthinkably wrong, and the other being the unthinkably right. <br /><br />ME sufferers have among the lowest quality of life of all illnesses, and are granted among the lowest research funding of all illnesses. <br /><br />That sounds like the unthinkably wrong…<br /><br />…But it happens to be reality! And policy. The middle of the window. For such mass suffering, what is spent per year in the US for now is a meager 5 million. 50 million would barely qualify as "acceptable". 500 million is where the "unthinkably right" begins…<br /><br />If one of these two "unthinkables" made it to reality, then there is no reason why the other should not. <br />All the more since it alone has LOGIC on its side. And even more so, human rights indeed. <br /><br />Thank you for spurring us, Samuel Wales.Anonymoushttps://www.blogger.com/profile/11441954388605142277noreply@blogger.com