tag:blogger.com,1999:blog-8373573052582581717.post5325900952245624254..comments2023-06-06T06:49:04.399-07:00Comments on Cinder Bridge: Lessons from Mr. Splashy Pantscinderkeyshttp://www.blogger.com/profile/01578961959712679966noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-8373573052582581717.post-67918993461861766782009-12-23T05:13:01.671-07:002009-12-23T05:13:01.671-07:00I think that Chronic Fatigue Syndrome is fine, so ...I think that Chronic Fatigue Syndrome is fine, so long as people understand that Metal Fatigue causes giant bridges to fall into the water and planes to fall from the sky... Maybe that would be a pair of images to use: Collapsing bridges and air wrecks, because that is what this hellish disorder does to people. I have watched my one sister-in-law fight it for several years.Mr. Miragehttps://www.blogger.com/profile/01973542092053935154noreply@blogger.comtag:blogger.com,1999:blog-8373573052582581717.post-81589493482925749272009-12-21T02:00:26.711-07:002009-12-21T02:00:26.711-07:00Making up a totally new name isn't an option. ...Making up a totally new name isn't an option. If we're going to raise awareness for the disease, and we don't have the power to change the name in any official capacity, we have to go with something that already exists.<br /><br />*sigh* ... Good comments, all. Both sides raise valid points, which is why I keep flip-flopping. Really, I'd like to push for a better name than CFS. I just don't know how far I should push, how much of an issue I should make it. Eventually we just have to pick one and move forward, you know?<br /><br />If you have any other thoughts, keep them coming. :)cinderkeyshttps://www.blogger.com/profile/01578961959712679966noreply@blogger.comtag:blogger.com,1999:blog-8373573052582581717.post-26291047430446742542009-12-20T17:03:32.999-07:002009-12-20T17:03:32.999-07:00"XAND" has the drawback that if the retr..."XAND" has the drawback that if the retrovirus is found to be unrelated, or merely coincident in future studies, the name becomes inaccurate, and the syndrome itself gets tagged as disproven. "CFIDS" is pronounceable, which always helps, and has the advantage of containing part of the already understood term. But that will just get shortened to CFS anyway, so you don't gain anything.<br /><br />But for better or worse, I think you're stuck with "Chronic Fatigue Syndrome". Best to work on turning around that image, though it's a long haul. But again, its not the name that has caused the current misunderstandings and dismissal, it is the fact that the symptoms cannot be objectively measured, and are taken as something that can be willfully controlled. <br /><br />How about "immunogenic debility disorder". "Debilitated" means the same as fatigue, but has much more serious connotations. The phrase means something like: debilitation generated by a disorder of the immune system. That might turn out to be technically inaccurate if the viral cause pans out.kylbenhttps://www.blogger.com/profile/17427950951461834741noreply@blogger.comtag:blogger.com,1999:blog-8373573052582581717.post-52356458398319758002009-12-20T16:47:35.453-07:002009-12-20T16:47:35.453-07:00OK, seriously, the name is not the problem. Peopl...OK, seriously, the name is not the problem. People are very suspicious of new "syndromes" lately, and in particular ones with vague and subjective symptoms. I'm not saying it's not real, but the hurdle here is getting it taken seriously no matter the name. <br /><br />The name should be whatever it is that best describes the condition, worry about the PR separately. But, that said, "ME" should be off the list, it is impossible to productively google for. <br /><br />I hope "Mr Sleepy Pants" wasn't taken as insensitive, but that's about how seriously most people will take it without knowing more about it. The more contrived the name sounds, the more it sounds like PR, the more difficult it will be to change that in this climate of invented syndromes being used as excuses for all manner of bad behavior and chronic character flaws.kylbenhttps://www.blogger.com/profile/17427950951461834741noreply@blogger.comtag:blogger.com,1999:blog-8373573052582581717.post-1072195613655085262009-12-20T14:10:43.947-07:002009-12-20T14:10:43.947-07:00OK, Mr. Sleepy Pants was funny.
I know I will be ...OK, Mr. Sleepy Pants was funny.<br /><br />I know I will be in the extreme minority here, but I think Chronic Fatigue Syndrome should be used, and the effort should be on educating people as to its meaning and severity. That seems more possible than getting people to recognize a new name.Sallynoreply@blogger.comtag:blogger.com,1999:blog-8373573052582581717.post-5271832296450452162009-12-20T07:39:04.806-07:002009-12-20T07:39:04.806-07:00I nominate "Mr Sleepy Pants"I nominate "Mr Sleepy Pants"kylbenhttps://www.blogger.com/profile/17427950951461834741noreply@blogger.comtag:blogger.com,1999:blog-8373573052582581717.post-63154089830243021942009-12-19T12:29:24.347-07:002009-12-19T12:29:24.347-07:00I don't know about the silly or cute acronym p...I don't know about the silly or cute acronym part. The idea is to get people to take this seriously. In the case of Mr. Splashy Pants, people already took the cause seriously, but a funny name lightened it up, humanized it, made it entertaining, and engaged the imagination of folks who might have otherwise thought of whale rescue as only emotionally dreary. In the case of ME/CFS/fibromyalgia, there's a lot of scorn that has to be overcome. Making it cute will only bring more scorn.<br /><br />If you want it to catch on, find an acronym that's engaging, endearing, mildly amusing, yet with an aura of vulnerability. For instance, if you could match a term to KOALA, or FAWN, or JENNIFER ANISTON.DeppityBobhttps://www.blogger.com/profile/03739975299662947480noreply@blogger.comtag:blogger.com,1999:blog-8373573052582581717.post-40332516248748488172009-12-19T12:10:34.706-07:002009-12-19T12:10:34.706-07:00I think you should not include CFS as one of the o...I think you should not include CFS as one of the options because it has already been tried and was an unsuccessful name. (I'm a little surprised people think of "fatigue" so trivially, since it has very strong connotations to me... "fatigue" makes me think of an action hero who can't go on any longer and collapses, or something like that. But I'm often in the minority as far as word associations go, and for whatever reason, "fatigue" wasn't successful at communicating the problem.)<br /><br />I think the better analogy to Mr. Splashy Pants would be thinking of a name which is medically accurate but has a cute or silly acronym. If you could think of one like that, I might be inclined to say go for it. But I can't think of any reason to include a name that has already failed.wyvernfreenoreply@blogger.com