XMRV - Tuller & Racaniello

[Guest guest]

http://bit.ly/eApDA8

CFS Patient Advocate

Patient Advocate

Sunday, February 6, 2011

Tuller with

Racaniello

This internet radio interview (http://bit.ly/gQ4QbS) is

worth listening to in its entirety.

Dr. Racaniello has a weekly interview

blogcast where he communicates information to the

public about viruses.

Dr. Racaniello does us a great favor to bring us this

information, and he has struck a chord with an

engaged public that wants to know more about

virology.

The listener gets to hear inside and rangy

discussions of scientists on the front lines.

Who would have imagined this could be such a

pleasurable and popular subject? More power to

Dr. Racaniello.

Dr. Racaniello has followed the issue of XMRV for

some time and his ideas are evolving on this issue.

He hopes to have Dr. Judy Mikovits on his show in

the future. Recently, Dr. Racaniello displayed great

agility (and honesty) in shifting his views quite

dramatically on the somewhat precarious subject of

*contamination* in XMRV studies.

In this week's interview, Dr. Racaniello talks with

journalist Tuller about *Journalism and

Science*.

Mr. Tuller is a lecturer in journalism at Berkeley, and

has been instrumental in developing a small but

important program combining journalism and public

health. Mr. Tuller writes informed and articulate

science articles, mostly for the NY Times Science

Times.

This conversation between Dr. Racaniello and Mr.

Tuller ranges from the general to the specific. It is a

very engaging and surprising conversation. If more

intelligent people begin to talk in this fashion, we

might actually learn something about the association

of XMRV (and/or other viruses) with this debilitating

and nasty illness.

While the conversation comes to no firm conclusions

relative to the XMRV association with ME/CFS, the

character of the conversation is informed and

exciting from a science angle. There is much to latch

on to here in terms of trying to see the big picture

relative to this unfolding disease drama.

Mr. Tuller is smart, receptive and with wide-ranging

interests. Any further reporting that Mr. Tuller does

on ME/CFS will be well-received by this reader, and I

look forward to his very perceptive journalism.

There is a previous blogpost on Tuller and his

very important, balanced and articulate NY Times

article on ME/CFS (~jvr: see below

########

Patient Advocate is Cairns

He is the patient advocate of his 36-year-old

daughter, who is housebound in St. MN

with CFS/ME

########

http://bit.ly/eOfvlF

CFS Patient Advocate

Tuesday, January 4, 2011

Tuller, NY

Times, on XMRV

Tuller wrote a very fine journalistic piece on

ME/CFS in the NY Times today (http://nyti.ms/gwlzhc).

The article first appeared online, and later in print in

the Science section of the daily paper. Thousands of

people will read this article.

An astute reader of this blog points out in a

comment that the Patient Advocate has been critical

of the coverage of the NY Times regarding the

subject of ME/CFS.

This is a correct statement- and the PA's criticism

was well-founded. Today's article indicates a seismic

event in the coverage of this story by the NY Times,

and it is a very important positive shift in the

balance of power in this *retroviral association*

struggle.

The Patient Advocate's son asks the

essential question:

*....Why did the NY Times

decide to publish this now....?*

It is an important question, but it is a difficult one to

answer. At a minimum someone, somewhere, at the

Times has gotten the idea that there is a story here.

Certainly the FDA Blood Advisory panel

recommendation must have elevated the NY Times'

interest on the subject.

Furthermore, it cannot be discounted that the

December 20th sandbag operation left a bad taste in

many people's mouths.

Many people saw, rightfully, that this was an

orchestrated effort to unseat the infectious disease

association from ME/CFS.

The PA surmises that this negative take-out

operation was one bridge too far for many serious

people.

This article indicates a return to a level playing field

for the pursuit of the science into this very complex,

difficult and life-destroying illness.

The battle over XMRV or other infectious agents is

not over, but this article goes a long way towards

clarifying the issue.

Many of the principles in this drama read this

newspaper, for better or worse. The NY Times is the

national newspaper, and many influential people get

their information from it.

Today's article is balanced, and it is fair. It was

crafted by Tuller in such a way as to mark the

most negative comments halfway through, and then

to proceed to discount or contest those very

arguments.

This gives legitimacy to the issues at hand - and

leave the door wide open for further coverage of

this drama.

The larger issue here has been going on for many

years:

Is ME/CFS an infectious illness?

Is there a pathogen or set of pathogens that

disrupt the immune system in a profound way,

making these patients severely ill?

This article goes a long way towards defining the

larger shape of the pathogen association.

*.... " If it is not XMRV, we

have to find out what it is....*

Dr. Coffin has said essentially the same thing.

The balance has been tipped towards establishing

ME/CFS as an infectious disease - and towards

finding treatments.

It is important that we not forget how we got here.

There were rumors at the March 2009 IACFS

conference in Reno that the WPI was onto something

big.

A few months later, in May 2009, the Patient

Advocate remembers *the moment* at the end of

the InvestinME conference.

In response to a query, Dr. Judy Mikovits leaned

forward and said, almost in a whisper:

*....Yes, we have found a novel

virus not previously associated with

this illness, and the study will be

published in Science magazine....*

From that very moment, the world of ME/CFS turned.

With October 2009 Science paper, Dr. Mikovits and

the Whittemore Institute established the

association of a retrovirus - XMRV - with ME/CFS.

Since then the Whittemore Institute has

been under serious attack, and many people have

been trying to knock them out.

Some of this contention is the way that science

operates, but much more of it is political in nature.

The political aspect is unseemly, and unusually

back-biting and negative - venal really, and laced

with hatred.

Through all this garbage, Dr. Mikovits and the WPI

have held their ground, confident of their research,

confident that there is an infectious viral component

of this illness, causing profound immune

dysfunction.

They have gone on to establish immune signatures

for this patient population - and the WPI's research

continues unabated, although outside funding has

not been forthcoming.

This is a tactic to strangle this research. This too will

be unsuccessful.

These consolidated and continuing attacks on the

Whittemore Institute have taken their toll.

These very few scientists and advocates who have

advanced this XMRV, infectious disease research

have taken a daily beating for over a year now. And

yet, they are still standing.

These people from this small, independent institute

are tough - and they have proven that they can take

a beating.

Amazingly they are still the same gracious and

generous people of several years ago. It is hard to

watch this assault, but the PA's admiration for the

constancy and persistence of this Institute's efforts

has grown and grown - and their survival - the WPI's

survival - will give other's hope.

We will see more WPI's in the future. This is not

1992, and Mikovits is not in the position of Dr. Elaine

DeFreitas. (Dr. DeFreitas was on her own with no

way to defend herself.)

The effort to demolish the WPI has failed, and, if

anything, this NY Times article substantiates this.

It is time to move on to more and broader research -

and on to treatments.

It is important to recall what has happened in the

last fifteen months.

Because of the October paper, research into XMRV

has sprung up in various places. ME/CFS and XMRV

have been in the public eye like no other time in

history.

It is time to push. A momentum has been building

and an inevitability has been settling in.

While science is not moving fast enough for patients,

researchers are becoming increasingly interested in

retroviral association with various neuro-immune

illnesses.

Other research into ME/CFS has consolidated around

the heightening of the XMRV association. For better

or worse, ME/CFS has been in the public arena like

never before and it will stay there now.

All this can be attributed to the Science paper, and

this has to be viewed separately from whether the

specifics of this paper pan out or not.

ME/CFS as an illness has been sprung loose, and this

little private institute in Reno, NV smashed the lock.

This article today will help take the pressure off of

Dr. Mikovits and the Whittemore Institute.

Today was a good day for ME/CFS research - and a

clear vindication of the research of Dr. Judy Mikovits

and the Whittemore Institute.

The subject of ME/CFS has been elevated to the

highest level of news journalism, and this can only

bring more brain power to wrestle with this illness.

Neither Dr. Mikovits or the Whittemore

Institute will object to this.