tag:blogger.com,1999:blog-1078685116296921818.post4660000851431462782..comments2023-04-26T09:15:19.142-04:00Comments on CFS Central: Interview with Ryan Prior and Nicole Castillo of The Blue RibbonMindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-1078685116296921818.post-82265044442207284822013-08-29T15:14:26.174-04:002013-08-29T15:14:26.174-04:00"But I did realize a much more national discu..."But I did realize a much more national discussion needed to take place," Prior says. "The goal of the film is to bring more awareness to this disease.” <br /><br />The CDC and the UK have been MORE than "aware" and have fought us tooth and nail to call it just fatigue and psychological. Many documentaries have been made in the last 25 years to increase "awareness&Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-1466531634157123502013-07-10T03:01:57.162-04:002013-07-10T03:01:57.162-04:00Alison has hit the nail on the head here - and I ...Alison has hit the nail on the head here - and I too prefer the term ME. Having said that my doctor (in N.Ireland) talks about Chronic Fatigue Syndrome because that is the name the NICE guidelines use. She is not adverse to the term ME however, but says her hands are tied she can use only CFS. <br /><br />I also went to a private consultant and he described my illness as ME (CFS) - he told Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-65791322625883616692013-07-09T21:40:55.372-04:002013-07-09T21:40:55.372-04:00thank you, ryan and nicole, for this important doc...thank you, ryan and nicole, for this important documentary you are undertaking. and for being so caring in how you do it. <br /><br />thank you, mindy, for interviewing them and reporting on it all.<br /><br />best,<br />rivkaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-80258343804829964032013-07-08T17:53:28.955-04:002013-07-08T17:53:28.955-04:00Thank-you Ryan and Nicole. I'm in Canada &...Thank-you Ryan and Nicole. I'm in Canada & have had M.E. since 1989. The lack of public & medical awareness, throughout all these years, has been unbelievable. I wish you the best of luck with your film. May I suggest you promote the use of the term M.E. over the use of CFS ? It minimizes the illness the minute people hear the name. They think "I'm tired all the time too. WhoAllison Haynes Maynoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-87275527880882511022013-07-08T17:04:36.043-04:002013-07-08T17:04:36.043-04:00Not about ME. ME patients do not use ME/CFS. CFS p...Not about ME. ME patients do not use ME/CFS. CFS patients do. Another hint: there is no CDC ME definition. Using the muddled, misguided ME/CFS or misrepresenting CFS as ME continues to misinform and adds to the confusion. Patients unfortunately go along. Jillhttps://www.blogger.com/profile/01316284870104429837noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-76424179970750489732013-07-08T12:38:56.364-04:002013-07-08T12:38:56.364-04:00They should interview Ken Lassesen in Bellingham, ...They should interview Ken Lassesen in Bellingham, WA -- he first became ill in the 1970's, then went into remission until 1999, was well until 2012, relapsed, and is now in remission again.<br /><br />There IS hope. He can be found on Facebook and was also featured recently on Cort Johnson's blog.Beckynoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-27116459818055073752013-07-08T02:43:09.037-04:002013-07-08T02:43:09.037-04:00Delighted to be a supporter of these two young peo...Delighted to be a supporter of these two young people as they take on an ambitious but hugely worthwhile project! <br /><br />I have been ill with ME since March 2012 and have now lost my job and much of my mobility. However there is a fantastic online ME community who have given me the advice and support so lacking from conventional sources. <br /><br />I think the time is ripe for change in Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.com