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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
BWG Members
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 ------------------------------ Sample email #2 ------------------------------ Dear Blood Working Group Member Signed, ------------------------------ Please keep up the pressure daily until this important information was disclosed as promised and Happy Holidays! |