ARC (Roger Dodd) response to query about Alter paper

[CBS]

On June 23, 2010, I sent a letter to Mr. Roger Dodd of the American Red Cross asking him to clarify his statement at a May 11th meeting in light of his presence at the IPFA/PEI 17th Workshop on Surveillance and Screening of Blood Borne Pathogens where Dr. Alter's presented at least portions of his now suppressed XMRV paper.

Many of you are aware of the May 11th remarks by Mr. Dodd. I thought you might find his response to my letter illuminating.

My strong response is that while I appreciate Mr. Dodd's very quick response to my e-mail (within two hours of sending my original query) and his expression of sympathy,

WE DO NOT NEED ANYONE'S SYMPATHY!

ALL WE NEED (AND ALL WE HAVE EVER ASKED FOR) IS A GOOD FAITH EFFORT, SOUND SCIENCE AND AN ABSENCE OF BUREAUCRATS COVERING THEIR OWN "BACK SIDES" (can I say "ASSES"?) AT THE EXPENSE OF PATIENTS AROUND THE GLOBE.

As for whether or not the last phrase of this statement applies to any one scientist or agency, only they know their underlying motivations.

Here is my e-mail and his response.

-------- Original Message --------
Subject: RE: dodd@usa.redcross.org
Date: Wed, 23 Jun 2010 23:14:04 -0400From: <Dodd@usa.redcross.org>To: ___
References: <4C22B504.3010507@Comcast.net>

Dear Mr ___:

Thank you for your comments. Please let me make it perfectly clear that I have the greatest sympathy for every person suffering from chronic fatigue syndrome and I do not ever want my remarks to be construed in any other light.

I am also very much aware of the intense interest that recent data on XMRV has generated within the CFS community. At the same time, it is necessary to recognize that the available information is not consistent, is somewhat controversial and that there is currently no information as to whether or not XMRV plays a causative role in all, some or any cases of CFS.

I have the greatest respect for Dr. Alter and have known him as a friend a colleague for many years, but I have not had the privilege of reading his paper at this time, so I am unable to comment on his specific findings.

Finally, all retroviruses are not created equal: many do not appear to cause any disease at all.

The science around XMRV is evolving and there is much yet to be learned.

Thank you for your interest.

Sincerely,

Roger Dodd




-----Original Message-----
From:
Sent: Wed 6/23/2010 9:29 PM
To: Dodd, Roger
Cc: managing-editor@nytimes.com; newseditors@wsj.com; a.murray@wsj.com; amy.marcus@wsj.com
Subject: dodd@usa.redcross.org

Dear Mr. Dodd,

I am writing you in the hopes of clarifying two apparently inconsistent statements made by you at the May 11, 2010 meeting of the FDA's Center for Biologics Evaluation and Research: Evaluating Emerging Infectious Diseases (EIDs) for Transfusion Safety.

I am also wondering if you'd care to clarify your statements in light of the recent release of a presentation at the IPFA/PEI 17th Workshop on Surveillance and Screening of Blood Borne Pathogens by Dr. Alter of the NIH. In Dr. Alter's presentation, he declares that studies by the FDA and NIH will soon be published that confirm the original Science study linking XMRV to CFS (Science, Lombardi et al., Oct 28, 2009), a disease which afflicts an estimated 1-4 million people in the US alone. Dr. Alter also raises the possibility of an XMRV infection rate in the blood donor pool of between 3-7% (approx 10-21 million people in the United States?).

At the May 11, 2010 FDA meeting in your introductory remarks you stated:

"In the context of XMRV, I think that there is an emergency, but it's a perceptual emergency. And I'm not as well versed in the tools of managing that, but I think that what we need to do is to manage people's reactions rather than people's safety at this point. I hope during the day that somebody can come up with a mechanism to manage that."

And later you said:

"I spent a little time considering whether there are any precedents from things that we've done since the appearance of AIDS. And I find really not a lot; HTLV we took rapid action because after all, it was a retrovirus. "

As I know you are aware, XMRV is a retrovirus and these two statements seem somewhat inconsistent. I do hope that the inconsistency was not the result of a lack of appreciation for the very serious nature of the relatively benign sounding "Chronic fatigue Syndrome." If that is the case, I would encourage you to make the time to learn more from one of several experts who have worked for decades with CFS patients. Drs. Nancy Klimas (Univ. of Miami), Lucinda Bateman (Fatigue Consultation Clinic, SLC, UT), Daniel Peterson (Incline Village, NV) and Jose Montoya (Stanford University Medical Center) are amongst a small group of the most experienced clinicians/scientists and they would all be in a position to convey the truly serious and intractable nature of this disease.

Additionally, in light of the recent release of Dr. Alter's presentation from the IPFA/PEI Workshop, (a workshop at which you presented) how has the knowledge of a report 3-7% donor infection rate and the possible confirmation of the Lombari paper changed your thoughts on the need to manage people's safety as well as their perceptions?


Sincerely,


___


WSJ article: http://blogs.wsj.com/health/2010/06/23/further-evidence-of-an-xmrv-chronic-fatigue-connection/

FDA's Center for Biologics Evaluation and Research: Evaluating Emerging Infectious Diseases (EIDs) for Transfusion Safety - Transcript: http://www.fda.gov/downloads/Biolog...ts/WorkshopsMeetingsConferences/UCM214030.pdf

IPFA/PEI 17th Workshop on Surveillance and Screening of Blood Borne Pathogens
Dr Alter's Presntation - http://www.sanquin.nl/ipfa/Upcoming...6bbdcc818c125706600483652/$FILE/1 - Alter.pdf
Mr. Dodd's presentation -
http://www.sanquin.nl/ipfa/Upcoming_Events.nsf/0/cbfb86b6bbdcc818c125706600483652/$FILE/1 - Dodd.pdf

Cc:
NY Times - Attn: Denise Grady
managing-editor@nytimes.com

Wall Street Journal:
newseditors@wsj.com
a.murray@wsj.com
amy.marcus@wsj.com <mailto:amy.marcus@wsj.com>

 

[SOC]

Excellent letter, CBS! I wish you had received an answer from Mr Dodd that directly answered your very pertinent questions. While I appreciate his sympathy, actions speak louder than words.

 

[Dr. Yes]

I remember when a friend of mine worked for UNICEF, which sometimes tried to raise funds from celebs, including Sean Connery. Mr. Connery sent back a brief form letter that said "while one should have sympathy for your problem/cause, I am currently unable to assist as I am already funding several Scottish charities."
(Slight paraphrase, but he actually did say the first half, including "problem/cause"!).

Sho it sheems that shympathy growsh on treesh.

 

[taniaaust1]

Nice of him to reply back and so fast. Who knows if that is a response to "manage reactions" or not. i guess we will have to wait and see.

 

[citybug]

What retroviruses do they consider to not cause disease? The other known human ones do, and mulvs and felv. Are they refering to endogenous genetic material, or some other animal retrovirus?

 

[George]

HTLV-2 and HIV-2 are non pathogenic.
HTLV-1 is only pathogenic in certain genetic persons. HIV-1 is of course the retrovirus from hell. (grins)