Another simple email a day campaign: Release the BWG XMRV Phase 2 Results Now



What/Why


The Blood Working Group has 4 "trials" with XMRV in ME/CFS patients that they are running. Phase I was to set up the four labs of which the WPI, CDC, FDA and another one tested their ability to find XMRV in spiked samples. That one was completed a couple months ago.

Phase II is how to find XMRV in ME/CFS patients and it will define the "gold standard" that is used from here on out. The protocols that are necessary in order to find XMRV in patients include handling, storage, primers, assays  - the whole shebang.

The Phase II portion should have been finished and the information released no later than the first week of November. They talked about it at the First International XMRV Conference in September, indicating they almost had it worked out and then.  At the October CFSAC meeting they promised to release the information as soon as it was ready. The available information indicated the results have been released to a portion of the scientific community but not to the patient population or researchers at large.

Since the release of the information to the patient population would allow us to compare the "correct" way to find XMRV to all the other "ways" that people are trying to find XMRV then it's pretty important that the information be available to us. Plus, it settles the "contamination" question once and for all.

The release of this information is critical to patients, researchers world-wide as well the general public.  Ask them to make good on their promise.

How

1) Send an email a day to the list below demanding the release of the BWG Phase 2 Results now as was promised at the CFSAC in October.

2) It would be advisable to vary the subject line day-to-day to help get past the spam filters.

3) Please send to the following.   At a minimum please include the top 5 names plus the chair and co-chair.  Scroll down for lists to paste into your mail client.


Responsible Organization Heads

Kathleen Sebelius

kathleen.sebelius@hhs.gov

Francis Collins

francis.collins@nih.gov

Anthony Fauci

anthony.fauci@nih.gov

Dennis Mangan               

dennis.mangan@nih.hhs.gov

This Campaign

phase2reportnow@gmail.com



BWG Members

NHLBI

Simone Glynn

Chair

glynnsa@nhlbi.nih.gov

HHS

Jerry Holmberg

Co-chair

jerry.holmberg@hhs.gov

ABC

Celso Bianco

 

cbianco@americasblood.org

CDC

William Bower

 

wab4@cdc.gov

BSRI

Michael Busch

 

mbusch@bloodsystems.org

ARC

Roger Dodd

 

dodd@usa.redcross.org

FDA

Jay Epstein

 

jay.epstein@fda.hhs.gov

FDA

Diane Gubernot

 

diane.gubernot@fda.hhs.gov

NIH

Eleanor Hanna

 

eleanor.hanna@nih.hhs.gov

CDC

Michael Hendry

 

mhendry@cdc.gov

MVRBC

Louis Katz

 

lkatz@mvrbc.com

AABB

Steven Kleinman

 

skleinman@shaw.ca

CDC

Stephan Monroe

 

stephan.monroe@cdc.hhs.gov

ARC

Susan Stramer

 

stramers@usa.redcross.org

BSRI

Leslie Tobler

 

ltobler@bloodsystems.org

CFIDS Association

Suzanne Vernon

 

cfids@cfids.org

The address list to copy to your email application.

The organizational heads plus the chair and co-chair

kathleen.sebelius@hhs.gov, francis.collins@nih.gov, anthony.fauci@nih.gov, dennis.mangan@nih.hhs.gov, phase2reportnow@gmail.com, glynnsa@nhlbi.nih.gov, jerry.holmberg@hhs.gov

The organizational heads plus the entire working group.

kathleen.sebelius@hhs.gov, francis.collins@nih.gov, anthony.fauci@nih.gov, dennis.mangan@nih.hhs.gov, phase2reportnow@gmail.com, glynnsa@nhlbi.nih.gov, jerry.holmberg@hhs.gov, cbianco@americasblood.org, wab4@cdc.gov, mbusch@bloodsystems.org, dodd@usa.redcross.org, jay.epstein@fda.hhs.gov, diane.gubernot@fda.hhs.gov, eleanor.hanna@nih.hhs.gov, mhendry@cdc.gov, lkatz@mvrbc.com, skleinman@shaw.ca, stephan.monroe@cdc.hhs.gov, stramers@usa.redcross.org, ltobler@bloodsystems.org, cfids@cfids.org

4) Email text.

It can be as simple as 'Release the BWG XMRV Phase 2 Results Now'

Two samples of longer emails are at the bottom.

5) Repeat daily, remember to change up the subject


Please keep up the pressure daily until this important information was disclosed as promised and Happy Holidays!


Sample email #1

------------------------------

To the Members of the NIH Blood Working Group
From the ME/CFS community

RE: Phase II trial results

The members of the patient community would like to request of the NIH and the Blood Working Group that the results of the Phase II trial be released to the patient population either through one of the many advocacy groups or to members of our internet media population no later than December 3rd.

The results of this trial are vital to the understanding of research being conducted at this time. Our community can not judge the validity of current work without it. The ME/CFS community has struggled for years and we are now asking to be informed and for the NIH Trans-working group and the Blood Working Group to provide important information and transparency to the patient community in a timely manner.

Opening good lines of communication with the patient community can keep things running smoothly in the future.

Signed,

------------------------------

Sample email #2

------------------------------

Dear Blood Working Group Member

Your work is of vital importance to me as a patient. I have spent years educating myself in an effort to work with uncooperative doctors, to educate family and friends and to help myself. I need be able to understand the research that is being done right now and I need your help to do this. Please, release the results of the Phase II trials recently completed so that I can validate research that is being published regarding XMRV.

The NIH seems to be taking the ME/CFS community to heart for the first time in decades and I would challenge your agency to open the lines of communication and to open them wide. Keep us informed of the results of the trials and the working of the NIH in regards to ME/CFS and lets build a working relationship now and in the future.

I am requesting the information from the Phase II trials be released to an advocacy group, or to the community media no later than Dec. 3, 2010.

Happy Holidays.

Signed,

------------------------------

Please keep up the pressure daily until this important information was disclosed as promised and Happy Holidays!