tag:blogger.com,1999:blog-8695992297755175196.post8585703334024367882..comments2023-11-03T03:46:46.500-07:00Comments on Quixotic: My M.E. Blog: How to win an argument about ME/CFS on the internetPatrick W. Calvinhttp://www.blogger.com/profile/18367341763526176019noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-8695992297755175196.post-19429323820765274952018-08-18T15:11:36.477-07:002018-08-18T15:11:36.477-07:00“We've all heard of those people whose ME/CFS ...“We've all heard of those people whose ME/CFS is so severe that they can do nothing but sit in a dark room all day with no sensory input. So it's tempting to think," if I mention those severely ill patients, it will highlight the seriousness of this disease." But in reality, this example is simply not credible to most people.”<br /><br />I disagree. I never mention the severe patients but I don’t think mentioning them harms us. In fact, I was thinking of talking about severe patients more. Those severe patients are underrepresented because they can’t speak for themselves. They need to be mentioned a lot and they need to have a seat at the table.<br /><br />Maybe it could be something like this: “As you can see here, this disease can be extremely severe: link to BBC audio of Merryn Crofts or video of Whitney.” What do you think?<br /><br />Brookehttp://brookewritesme.comnoreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-10795985095559035262018-08-14T22:14:41.432-07:002018-08-14T22:14:41.432-07:00Civility maintains your credibility; the minute yo...Civility maintains your credibility; the minute you go into attack mode, the argument is lost as well as the opportunity to make a dent in incorrect beliefs. If not for the person you are answering, then for anyone else reading the comments.<br /><br />If the comments aren't moderated, it's almost not worth the effort.ABEhrhardthttps://www.blogger.com/profile/17211038591900883672noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-90667643448811284332015-02-24T22:13:15.457-08:002015-02-24T22:13:15.457-08:00Thanks for your article. It should be useful to pe...Thanks for your article. It should be useful to people with Lyme disease, who are in a similar political position to people with ME/CFS.Phyllis Mervinehttp://www.lymedisease.orgnoreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-68547158863794930102013-03-11T22:14:21.426-07:002013-03-11T22:14:21.426-07:00The CFIDS Assoc of America posted this on FaceBook...The CFIDS Assoc of America posted this on FaceBook today - FDA will host a 2-day workshop on drug development in CFS and ME on April 25-26. It will be webcast and there are opportunities for patient participation. Registration is required to attend in person or by webcast. Federal Register notice: http://1.usa.gov/Y4ytgz<br /><br />We'll post info about this meeting and why YOUR participation is so critically important on our Research1st site. We will also be providing some educational opportunities so you can learn more about the drug development process in preparation for the workshop.<br /><br /><br />Patrick, thanks again for your informative blogs. On the last one that I read, you talked about Dr. Yakso and methylation treatments. I was excited to ask my doctor about that when I went to see her. She smiled and said those are only done out of the country. We have tried Glutathione injections alone, and Glutathione injections with antiviral medications. Neither helped. I am now trying injections of Glycyron plus and AMP/B6/B12.<br />JoyceMEhttps://www.blogger.com/profile/05696972646401958630noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-45793604235760100292013-03-10T22:06:15.447-07:002013-03-10T22:06:15.447-07:00Hi ME Awareness Pics,
I think you make a valid p...Hi ME Awareness Pics, <br /><br />I think you make a valid point, and there are certainly times when it is appropriate to discuss the very severely ill. I was generalizing, but I think it can be inserted effectively especially, as you say, if you note that ME comes in a wide range of severities. I feel that we need to take small steps in this public image battle, taking what gains we can reasonably get then building off of those gains in the future. Sometimes the most extreme cases can raise doubts in people's minds, even though we know them to be true. But this raises a difficult dilemma, because those most severely affected by ME deserve, perhaps most of all, to be known and understood. There's no good solution, I think we just have to use our best judgment in each situation.<br /><br />Thank you for you interest in my post, and for your excellent contribution to the discussion. Please don't hesitate to share the link on Facebook.Patrick W. Calvinhttps://www.blogger.com/profile/18367341763526176019noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-60559284678949724692013-03-09T11:55:30.467-08:002013-03-09T11:55:30.467-08:00Hi Patrick,
Thank you for this well thought out b...Hi Patrick,<br /><br />Thank you for this well thought out blog - can we share the link through our Facebook page so that others can benefit from your wisdom?<br /><br />Just one thing that I don't completely agree with. Severe cases have to be mentioned when talking about ME because this disease is potentially extremely severe and severe cases by no means rare - but perhaps there is a need to indicate that there is a range of disability. Most diseases are known by how sick the sickest are - while ME is not. If the public knew how truly devastating ME can be, they would be horrifed. But perhaps I am approaching this from public relations point of view and how to win hearts rather than how to win an argument :-)ME Awareness Picshttps://www.blogger.com/profile/00671319591325671542noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-77825094222842435382013-03-06T12:56:01.067-08:002013-03-06T12:56:01.067-08:00I think this post is great and I hope people to ta...I think this post is great and I hope people to take it to heart. I read it because a FB friend shared it. I plan to pass it along. It really is essential that we learn to harness our precious energy by communicating clearly and effectively both on the Internet and in other arenas. <br /><br />My first advice to people, when the subject comes up, is usually just to avoid comment unless it's going to make a difference. Some Internet forums aren't going to be seen by enough people to warrant discussion. It may be difficult to resist the urge to set someone straight, but engaging in a flame war can be draining and energy is something that's in short supply for most PWMEs.<br /><br />My second piece of advice is usually to keep it short. If it's more than a paragraph or two, nobody's going to read it. I think this is especially important when people are responding to petitions or when they're writing to government officials. It's heartbreaking to see people submit page upon page of personal testimony, knowing that all that work has been for nothing. <br /><br />I think it also makes sense to avoid references to controversies within the ME/CFS community. References to the name issue, CBT, GET, the British psychiatric cabal, the ME vs CFS debate or the idea that ME/CFS is a form of AIDS will make no sense to anyone unfamiliar with these issues and they could make the writer sound unhinged. Nancy Hallhttps://www.blogger.com/profile/13491298873432182489noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-4533499577104940672013-03-06T08:04:46.052-08:002013-03-06T08:04:46.052-08:00I show people that the new syndrome of CFS was coi...I show people that the new syndrome of CFS was coined BECAUSE the CDC saw Cheney, Peteron, Komaroff and Caligiuri's evidence of low NK cell function.<br /><br /> What kind of person would treat a syndrome, or "illness" as if it were devoid of the evidence that gave it a name?<br /><br /><br />http://www.ncbi.nlm.nih.gov/pubmed/2824604ErikMoldWarriorhttps://www.blogger.com/profile/09322977790589236453noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-75867716505560264342013-03-05T15:47:08.446-08:002013-03-05T15:47:08.446-08:00May I second the suggestion that patients write a ...May I second the suggestion that patients write a pithy, well-reasoned response that can easily be amended to fit the situation and keep a copy to be used as the situation warrants. I probably use this timesaver several times per week. KALhttps://www.blogger.com/profile/18263661395286591110noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-84449776350921212013-03-05T10:39:34.305-08:002013-03-05T10:39:34.305-08:00Heidi, I can imagine how frustrating that must be....Heidi, I can imagine how frustrating that must be. To not be believed when you know you are correct is absolutely maddening. <br /><br />I very much appreciate your comments and knowing that others find this information helpful. I nearly deleted the draft of this post before I posted it. I wasn't sure if it came off as too preachy (which was not my intent.) So thank you for the reassurance. <br /><br />Best of luck to you on your SSA battle. Patrick W. Calvinhttps://www.blogger.com/profile/18367341763526176019noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-63048280876657306292013-03-05T10:31:20.016-08:002013-03-05T10:31:20.016-08:00Hi Gabby (Nielk), it's been a long time. Nice...Hi Gabby (Nielk), it's been a long time. Nice to hear from you. I hope you've been feeling well enough lately to get some painting done. Sadly, I've been too busy, but I have a good idea for my next one. Patrick W. Calvinhttps://www.blogger.com/profile/18367341763526176019noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-61822463606371339142013-03-05T04:28:23.094-08:002013-03-05T04:28:23.094-08:00Thank you Patrick for these pointers. I will espe...Thank you Patrick for these pointers. I will especially heed the one about not coming from an emotional place. This is hard to do when the subject matter is so personal. Not only is it personal but our own honesty and morality is many times questioned. It is a good idea though to take some time to detach, compose our thoughts, read and re-read our comment before sending it out.<br /><br />Thank you,<br />GabbyNielkhttps://www.blogger.com/profile/03116437914550295765noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-52115610468112166082013-03-05T02:40:09.867-08:002013-03-05T02:40:09.867-08:00This comment has been removed by the author.Heidihttps://www.blogger.com/profile/13386773045772878371noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-43003996223479544362013-03-05T01:59:16.673-08:002013-03-05T01:59:16.673-08:00A well reasoned argument. Thank you. A well reasoned argument. Thank you. Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-40643744108907278112013-03-01T19:37:01.052-08:002013-03-01T19:37:01.052-08:00Thanks for the kind words Lisa. Made my day. I&...Thanks for the kind words Lisa. Made my day. I'm off to check out livingwithCFS.com....Patrick W. Calvinhttps://www.blogger.com/profile/18367341763526176019noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-29792058914623210832013-03-01T10:09:58.349-08:002013-03-01T10:09:58.349-08:00Patrick,
Thank you for this post, and for your wo...Patrick,<br /><br />Thank you for this post, and for your wonderful blog, which I just discovered. I think the points you make are so important. While people with ME/CFS who are doubted and dismissed are surely suffering from the ignorance of others, the question is what to DO about it. I believe it DOES matter what we say and how we approach it if we are ever to have the chance of being heard and understood.<br /><br />I'm posting your wonderful piece on my Facebook page! Thanks for all you do.<br /><br />Lisa Myers<br />http://livingwithcfs.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-76496634787205734492013-02-27T03:14:33.669-08:002013-02-27T03:14:33.669-08:00I like the quippy one-liner. It saves a lot of br...I like the quippy one-liner. It saves a lot of brain energy.<br /><br />Thanks for the outstanding post. I'll remember it whenever I make a public comment about ME/CFS.<br /><br />One of the things I like about ME/CFS is that I get a chance to see what other people do for a living. A trial lawyer sounds so cool.<br /><br />Best to you.zachttps://www.blogger.com/profile/15189027321961226572noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-74530558258108793782013-02-23T20:28:11.708-08:002013-02-23T20:28:11.708-08:00That makes a lot of sense, J. I happened to see o...That makes a lot of sense, J. I happened to see one of your comments to the recent SF Examiner article and agreed with how you handled it. Thanks for being one of the people who represents the community well. Patrick W. Calvinhttps://www.blogger.com/profile/18367341763526176019noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-68031499430825057362013-02-23T20:25:42.593-08:002013-02-23T20:25:42.593-08:00Thank you. Your blog must have a lot of followers...Thank you. Your blog must have a lot of followers because the link you posted brought a wave of traffic here. Thanks. I wish I could read it, but I can't read Norwegian. Patrick W. Calvinhttps://www.blogger.com/profile/18367341763526176019noreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-64206105036244363272013-02-23T14:09:31.853-08:002013-02-23T14:09:31.853-08:00Good thoughts, Patrick. My approach is generally t...Good thoughts, Patrick. My approach is generally to keep things as brief as possible when I do respond, and I generally try not to unless there's something very specific I can address in brief...I feel like the longer a comment I leave, the more likely it is that someone will seize on one tiny part of it, and if I give them a bunch of possible avenues, I always remember that they will undoubtedly have more energy than I, and I'll end up worse for wear if I try to engage at length. So I keep a few things on my mental pinboard about this: <a href="http://xkcd.com/386/" rel="nofollow">xkcd</a>, <a href="http://www.penny-arcade.com/comic/2004/03/19" rel="nofollow">Penny Arcade</a>, <a href="http://dailyoftheday.com/commenting-on-the-internet/" rel="nofollow">Jim Benton</a>. :D -JocelynAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8695992297755175196.post-53845733938427220492013-02-23T10:31:33.675-08:002013-02-23T10:31:33.675-08:00Thank you for sharing this. Best regards from Norw...Thank you for sharing this. Best regards from Norway.Anonymousnoreply@blogger.com