The Patient Advocate paid his conference fee to hear three presentations. Foremost among these was Dr. Marcus Conant, a relative newcomer to the ME/CFS field at the age of 73. If you want to learn more about Dr Conant look here. The Patient Advocate was not disappointed. This guy is great. We will be seeing more of Dr. Conant as XMRV moves relentlessly along.
Dr. Conant gave a talk entitled “Lessons - learned from HIV”. Dr. Conant, who was in the front lines of the AIDS diagnosis and treatment, is no shrinking violet. In the early 1980's he was one of a very few doctors in San Francisco who were willing to deal with doomed patients - often dead in weeks or months. Dr. Conant speaks his mind and he does not flinch. He began his talk by referencing the plague of 1348 and drew parallels, past and present, to it. He spoke in an impassioned fashion of the advocacy problems of trying to defeat ignorance, and how to move the agenda forward. His presentation had very humorous – even caustically absurd - moments to it, indicating the complex and emphathetic nature of his rangy personality. His central recommendation is to define the cause and to focus the research. In doing this Dr. Conant recommended not groveling, not fawning, not eliciting sympathy - just moving forward with clarity and determination. He encouraged activism and self-reliance regarding research, saying “Congress is your last resource, not the first”. Dr. Conant obviously does not get sidetracked or waste his time talking to non-helpful individuals. On the other hand he urges efforts toward inclusion - not fracturing - by trying to bring your adversaries to your side of the issues. The talk was deeply emotional and Dr. Conant, an unknown to most of the attendees, made a strong connection, as he was given a spontaneous standing ovation by the entire 200+ people in the hall.
The Patient Advocate has read on the internet that Dr. Conant has left his practice in San Francisco and come to New York because of an interest in this new retrovirus named XMRV. This was confirmed in conversation with him. The Patient Advocate surmises that Dr. Conant thinks that XMRV is a potential player in ME/CFS. Dr. Conant presents lyme and its affiliate, ME/CFS, as an infectious disease. With this in mind the Patient Advocate sees Dr. Conant as “an advocate for ME/CFS research and treatment”. At a minimum Dr. Conant’s expertise can be involved in upcoming treatment trials of antiretroviral drugs in ME/CFS patients.
The atmosphere of the ILADS conference was diametrically opposed to the CFSAC Science Day, which should be canceled. Much of this was due to the ILADS presentations of these four pro XMRV-related infectious disease physicians. There was none of the self-satisfied, politically-motivated vapors that filled the HHS conference room. The Patient Advocate saw Science Day as an attempt to put the breaks on further revelations about the connection of XMRV. The PA has to ask, why is this?
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. The FDA is going to be exposed to insurance claims coming from those who have been made sick through transfusions. This is a repeat of the AIDS epidemic. It is in their interest to string this out, until the Blood working group reports - and longer.
Other reasons for these delaying tactic were advanced to me by a knowledgeable and insightful friend:
“Where the money has not simply disappeared, or been poured down a rathole, it went to fund the amateur psychiatry of Stephen Straus or Bill Reeves. (Nobody seemed concerned at the time about them publishing work far outside their areas of expertise, except, as always Lenny Jason.) Avoiding exposure of this, with concomitant collateral damage to institutions, and future funding, is the first priority of those in charge. As second goal is to wrest control from WPI, so new research serves to provide more funding for the same institutions who screwed around, wasted time and treated funding for this subject as a kind of slush fund to cover miscellaneous expenses not covered by other allegations.
A third goal is to avoid committing the federal government to paying disability, or diagnostic and treatment costs, for another few million people. Current expenditures for HIV run around $1,000 per person per month -- for life. Since we are talking about another retrovirus and some of the same drugs, costs for treating ME/CFS are unlikely to be lower. Taking on a new $1,000,000,000/month liability was not in the Congressional plans for medical reform. Projected funding is already inadequate without this."
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.ReplyDelete
Thanks, as always, for your insights. Reading this entry was a highpoint of my day.ReplyDelete
"Following the money" is obviously pertinent; Pat Fero's investigation into the research and where the money has gone is pertinent.ReplyDelete
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.
Others should be funded also: Nancy Klimas, Dr. Cheney, etc., the real experts in this field.
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.
Every movement has a guide: Dr. Conant seems to be ours.
Thank you so much Chris, for your excellent gathering of vital information from which we can continue our advocacy efforts.
Blessings on you and your daughter.
psst! That was 'allocations', not 'allegations'.ReplyDelete
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.ReplyDelete
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 livesReplyDelete
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.ReplyDelete
Excellent and right on the money! No pun intended.ReplyDelete
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?).ReplyDelete
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.
"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."ReplyDelete
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.
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.ReplyDelete
what did conant say abt xmrv+'s trialing arv's....was there talk abt any other treatments for xmrv+ to try.
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!!!!!!
thank you SO much for sharing your experience and interpretation.
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.ReplyDelete
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" . . .ReplyDelete
My CFS doctor told me this months ago. This is all the more reason to stand behind WPI.
'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.'ReplyDelete
I do not agree with your remark above.
I spoke with Bob Bransfield at the London ILADS conference and I think his presentation at that and ILADS conference said it all.
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.
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.
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.