tag:blogger.com,1999:blog-1078685116296921818.post7741097488033684658..comments2023-04-26T09:15:19.142-04:00Comments on CFS Central: Suzanne Vernon's Take on Two XMRV StudiesMindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.comBlogger22125tag:blogger.com,1999:blog-1078685116296921818.post-70060364513216478242011-02-05T05:46:31.335-05:002011-02-05T05:46:31.335-05:00wow; i learn something new every time i read one o...wow; i learn something new every time i read one of your posts. hadn't known about superinfection resistance, or whatever it's called. thanks for keeping them honest!Justinhttps://www.blogger.com/profile/16661093224060056052noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-43212513658994880282011-01-30T09:54:17.802-05:002011-01-30T09:54:17.802-05:00c.d.c. and other institutions always place moles i...c.d.c. and other institutions always place moles in places of interest to them...the c.i.a. does it all the time...sincerely aidan walsh southampton, u.k.aidan walshnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-18249907140070301492011-01-30T08:18:02.433-05:002011-01-30T08:18:02.433-05:00dr. vernon i have a few questions for you? why is ...dr. vernon i have a few questions for you? why is it the cfids association never talks about the very important work found by gail kansky and her team on ciguetera (epitope)and the link to low level radiation...also why are all of you so fixed on xmrv and where it has 'not been replicated' and the above work is 'replicated' science...all patients tested for the ciguetera toxin areaidan walshnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-39156184781265348252010-11-27T05:40:29.196-05:002010-11-27T05:40:29.196-05:00Vernon sounds almost robotic in her responses. Cer...Vernon sounds almost robotic in her responses. Certainly not like any form of "advocate" I would recognize.John Garcianoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-54449684342951243282010-11-22T17:24:49.777-05:002010-11-22T17:24:49.777-05:00How to reach you privately, Mindy, there are a cou...How to reach you privately, Mindy, there are a couple things I would like to discuss with you- and suggestion of interview. Thanks, KAtiAnonymoushttps://www.blogger.com/profile/12281551619335996831noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-12407771233580948182010-11-20T16:10:12.949-05:002010-11-20T16:10:12.949-05:00Henrich et al. should correct their article as it ...Henrich et al. should correct their article as it does say 'revised CFS case definition (http:// www.cdc.gov/cfs/cfsdiagnosis.htm).' Not Holmes. Also, the CDC are currently using the revised Fukuda definition, not Fukuda, not Holmes. The CAA should be complaining about their failure to provide clarity around the definition used.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-70358576838145180202010-11-19T20:17:00.930-05:002010-11-19T20:17:00.930-05:00I've come to conclude that the CAA is an outst...I've come to conclude that the CAA is an outstanding advocacy group. They are outstanding at advocating for themselves at the expense of people with true M.E.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-80528057234496386352010-11-19T11:44:31.865-05:002010-11-19T11:44:31.865-05:00Good catch, Willow. Thanks.Good catch, Willow. Thanks.Mindy Kiteihttps://www.blogger.com/profile/12570126270241201680noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-4443723179263379212010-11-18T17:55:34.544-05:002010-11-18T17:55:34.544-05:00It is, unfortunately, not unusual for the Fukuda c...It is, unfortunately, not unusual for the Fukuda criteria to be referred to as "revised CDC" criteria. This is a revision from Holmes, as has been stated. It does get confusing now that there is a new "revision." However, use of the Reeves is not usually so transparent as to state that it is a revision. They usually simply make the false claim to be using Fukuda. You generallyWillownoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-54483206704394815942010-11-18T01:59:06.608-05:002010-11-18T01:59:06.608-05:00The CAA has been the primary advocacy organization...The CAA has been the primary advocacy organization for the CDC's CFS and not for the truth, you won't find any information about the official status of M.E. at G93.3 or the global epidemics. <br /><br />You just need to read Tom Hennessy's story of the real history of the name change movement at his website R.E.S.C.I.N.D. to understand how CAA has helped destroy lives by keeping the Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-51797041191726974662010-11-17T09:27:35.277-05:002010-11-17T09:27:35.277-05:00I agree with a slogan I saw recently, "the CA...I agree with a slogan I saw recently, "the CAA don't represent ME". My sentiments exactly.Lisa Simpsonnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-58667997841187807282010-11-17T01:01:28.951-05:002010-11-17T01:01:28.951-05:00Dr. Vernon's answers sound cagey to me like so...Dr. Vernon's answers sound cagey to me like someone hedging their bets. Frankly, like a bad politician on a Sunday talk show. The CAA is so far behind the curve they are flat lining. (apologies for the mixed metaphor). We need a real advocacy organization. The lead research organization is now the WPI. <br /><br />michaelAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-47013815790486826252010-11-16T23:54:02.877-05:002010-11-16T23:54:02.877-05:00We questioned the CAA very closely about whether o...We questioned the CAA very closely about whether or not they still consider themselves to be an advocacy group, on Facebook recently. Finally, we did get the answer that "yes, the CAA is an advocacy group." This was just before the "inside voices" commentary by Kim McCleary. <br /><br />The good news is, that should disqualify any of them from sitting on the CFSAC board Khaly Castlehttps://www.blogger.com/profile/11225321930336123939noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-66896450102445555702010-11-16T18:39:15.652-05:002010-11-16T18:39:15.652-05:00I'd love to know what type of useful research ...I'd love to know what type of useful research they are funding? 25,000,000 million dollars researching WHAT??? All they've done is confuse everyone into believing The CDC bullshit.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-83568966069569471552010-11-16T16:37:35.554-05:002010-11-16T16:37:35.554-05:00The CAA is now primarily a research organization a...The CAA is now primarily a research organization and has been for the past three years or so. The only problem is, they've neglected to inform the patients of this fact.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-33975833318385736972010-11-16T09:42:14.972-05:002010-11-16T09:42:14.972-05:00I would have to agree with Lisa Simpson's comm...I would have to agree with Lisa Simpson's comment about the CAA and especially Dr. Vernon. I have been watching them closely for several years now and have never seen them do anything even remotely resembling advocacy for us.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-3064805145243370962010-11-15T22:22:00.366-05:002010-11-15T22:22:00.366-05:00I'm not sure the CAA can in all conscience cal...I'm not sure the CAA can in all conscience call themselves an advocacy organisation anymore Otis. If they truly were they would as you say be making the news rather than reporting it. This kind of ineffectual response by Ms Vernon leaves you with the distinct impression that they are not really anything more than a mouthpiece for other organisations these days. Beyond the odd perfunctory Lisa Simpsonnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-33694483249233863952010-11-15T21:02:12.047-05:002010-11-15T21:02:12.047-05:00Well said Lisa.
I have misgivings about Dr. Ver...Well said Lisa. <br /><br />I have misgivings about Dr. Vernon (a co-author on the Empiric definition) interpreting the Henrich et al study to indicate they used "Revised Holmes" (new on me) aka the Fukuda criteria. Why does the CAA now speak for the authors of this study? I would rather an advocacy organization spend time making news rather than reporting it.<br /><br />Thank you asOtishttps://www.blogger.com/profile/03119369885600443323noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-40600631638507948412010-11-15T20:44:30.482-05:002010-11-15T20:44:30.482-05:00I really don't see much point to these replica...I really don't see much point to these replication studies unless we know what disease is being studied. The differing (ever changing) definitions and names used in the US and Canada have rendered research next to useless because in every case the patients have been chosen according to differing criteria. It's just time and money wasting. To quote Dr Greensmith:<br /><br />“M.E. is Lisa Simpsonnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-89151726844044856672010-11-15T18:42:08.620-05:002010-11-15T18:42:08.620-05:00The above should read, when would it ever be accep...The above should read, when would it ever be acceptable. lolAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-10373192184760252812010-11-15T18:37:44.096-05:002010-11-15T18:37:44.096-05:00It is concerning that the authors of Henrich et al...It is concerning that the authors of Henrich et al. felt it unnecessary to be clear about the definition they used. When would it ever be expectable to use the word 'revised' next to Fukuda except when referring to the Revised Fukuda. It is equally concerning that Dr Vernon choose not to question their use of the word 'revised' when she wrote her latest article, after all Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-71767648183780989842010-11-15T18:22:26.332-05:002010-11-15T18:22:26.332-05:00Thank you Mindy. Have been missing your posts. It...Thank you Mindy. Have been missing your posts. It is so quiet for news these days. And patients are -still- waiting.Anonymoushttps://www.blogger.com/profile/12281551619335996831noreply@blogger.com