tag:blogger.com,1999:blog-4895604594896814289.post7077467386945188004..comments2023-08-20T01:37:48.791-07:00Comments on CFS Patient Advocate: ILADS conference 2010 - Dr. Marcus Conantconsuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-4895604594896814289.post-21602786369194591952010-10-18T05:30:29.043-07:002010-10-18T05:30:29.043-07:00'In the PA’s estimation, this is in reaction t...'In the PA’s estimation, this is in reaction to the changed ME/CFS topography since October 2009. There is no other explanation for it.'<br /><br />I do not agree with your remark above. <br /><br />I spoke with Bob Bransfield at the London ILADS conference and I think his presentation at that and ILADS conference said it all. <br /><br />More increasingly the ILADS doctors and those in ME/CFS and other illnesses are finding their patients multiply infected with bacteria viral and other things and so that is why ILADS have launched into the Decade of the Microbe.<br /><br />This shift in emphasis is more to do with the reality that doctors are finding in practise as opposed to the narrow definitions and treatments thrust upon us by IDSA Lyme Guidelines. <br /><br />Having said that I am sure many of the lyme doctors are well aware of the possible links with XMRV and this was recognised in the presentations I saw at the London ILADS conference. I was not able to get to the ILADS conference last week but really appreciated reading your take on things. <br /><br />Thank you.Joannehttps://www.blogger.com/profile/12905137222286141548noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-86727449240193667132010-10-17T20:04:53.087-07:002010-10-17T20:04:53.087-07:00You wrote: "A second goal is to wrest control...You wrote: "A second goal is to wrest control from WPI, so new research serves to provide more funding for the same institutions who screwed around" . . .<br /><br />My CFS doctor told me this months ago. This is all the more reason to stand behind WPI.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-5541733490117629032010-10-17T19:15:20.896-07:002010-10-17T19:15:20.896-07:00I remember hearing of Dr Conant's work...maybe...I remember hearing of Dr Conant's work...maybe from Randy Shilts book. A fierce and caring advocate experienced at dealing with political opposition. Just the man we need.Rosshttps://www.blogger.com/profile/18070885278073090559noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-9386122680469161432010-10-17T18:46:50.422-07:002010-10-17T18:46:50.422-07:00will u report what brewer and montoya said also. ...will u report what brewer and montoya said also. we know brewer is trialing arv's on 15 or so xmrv pts...what did he say abt their progress.<br /><br /><br />what did conant say abt xmrv+'s trialing arv's....was there talk abt any other treatments for xmrv+ to try.<br /><br />as soon as i read that dr. conant was moving from his sf hiv/aids practice to study xmrv in ny....i knew the wind was going to start to blow in our favor.....love it!!!!!!<br /><br />thank you SO much for sharing your experience and interpretation.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-24422666348240557842010-10-17T17:15:58.390-07:002010-10-17T17:15:58.390-07:00"It becomes increasing obvious to the Patient..."It becomes increasing obvious to the Patient Advocate that the FDA and others are really freaked out over the blood supply, and their responsibility for this."<br /><br />This is obvious to me too. No matter how freaked out they are, sooner or later, it is going to catch up with them. It just gets worse while they are trying to cover it up or run away from it.<br /><br />Patricia Carter<br />www.mecfsforums.comWildaisyhttps://www.blogger.com/profile/06367939092107380380noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-2294513276634747132010-10-17T16:37:50.993-07:002010-10-17T16:37:50.993-07:00Thank you for your on-locale take. From afar, I l...Thank you for your on-locale take. From afar, I liked Science Day - great work from other routes that could chop off a lot of that $1B/month. Given the wider world's view right now, I don't fault LeGrice for his message. But I also sensed some in the audience didn't want to give XMRV time but to bury it (to divert precious patient dollars?).<br /><br />ILADS has some real characters, but they've stepped up and done (along with VPI-Dx) what I'd asked of CFSAC. ME/CFS and Lyme are too alike; they have to be looked at together and things sorted out. This Dr. Conant sounds like right person, place, and time.Chris Nnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-53553646172050472952010-10-17T16:26:35.390-07:002010-10-17T16:26:35.390-07:00Excellent and right on the money! No pun intended....Excellent and right on the money! No pun intended.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-88767074301178782172010-10-17T16:23:12.767-07:002010-10-17T16:23:12.767-07:00For those of us who will be watching soon, could y...For those of us who will be watching soon, could you give a rough idea of when the good speakers spoke? I'm looking forward to watching the highlights but don't have the time (or patience) to see the whole thing.cinderkeyshttps://www.blogger.com/profile/01578961959712679966noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-90225781650825411262010-10-17T15:44:46.030-07:002010-10-17T15:44:46.030-07:00I still think the 17 million of us together can ea...I still think the 17 million of us together can earn loads more money then it will cost to treat us! We need a chance to make something of our livesAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-30234958910897254062010-10-17T15:26:32.517-07:002010-10-17T15:26:32.517-07:00Thank you, Chris. This the most excellent perspect...Thank you, Chris. This the most excellent perspective I've read in a long time.I agree with everything you are saying. Also a high point of my day. Thank you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-86113048936515242112010-10-17T15:25:30.173-07:002010-10-17T15:25:30.173-07:00psst! That was 'allocations', not 'all...psst! That was 'allocations', not 'allegations'.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-27509517805571982822010-10-17T14:47:21.952-07:002010-10-17T14:47:21.952-07:00"Following the money" is obviously perti..."Following the money" is obviously pertinent; Pat Fero's investigation into the research and where the money has gone is pertinent. <br /><br />We must continue the demands to fund the WPI, or we must be prepared to have a Congressional Hearing and demand the truth be revealed.<br /><br />Others should be funded also: Nancy Klimas, Dr. Cheney, etc., the real experts in this field.<br /><br />We must demand to be tested appropriately at HIV clinic across the nation; Centers of Excellence are fine, especially if they teach new doctors to treat us, but immediate treatment is as close as our HIV clinics wherever we live, with no major traveling involved. <br /><br />Every movement has a guide: Dr. Conant seems to be ours. <br /><br />Thank you so much Chris, for your excellent gathering of vital information from which we can continue our advocacy efforts.<br /><br />Blessings on you and your daughter.kathrynhttps://www.blogger.com/profile/16819415896159458802noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-74394791707349578462010-10-17T14:29:01.809-07:002010-10-17T14:29:01.809-07:00Thanks, as always, for your insights. Reading thi...Thanks, as always, for your insights. Reading this entry was a highpoint of my day.Rebeccanoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-11211526711908019802010-10-17T13:57:17.351-07:002010-10-17T13:57:17.351-07:00Thank you Chris for this hopeful report about XMRV...Thank you Chris for this hopeful report about XMRV, interestingly days after the CFSAC meeting. I am very pleased that Dr Conant is a good ally to have among us, with good experience about funding, clinical trials and HIV medication.Anonymoushttps://www.blogger.com/profile/12281551619335996831noreply@blogger.com