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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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FRANCIS S. COLLINS, MD PHD, NIH CONTACT INFO - inluding email address!!!!

Discussion in 'General ME/CFS News' started by chloe, Sep 14, 2011.

  1. chloe

    chloe

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    California
    FRIENDS,

    The email address for Dr. Francis S. Collins, Director of NIH, is Francis.Collins@nih.hhs.gov --- for those
    too tired to write, send the composition through a printer, find a stamp, a mailbox ---- it's as easy as
    sending an email.

    I am always of the point of view that we should always be contacting the powers that be within our
    nation's scientific community to encourage them to conduct research on our plight. For want of a better
    term, I'll call that "chronic fatigue syndrome," but I believe any communication should debunk the use of that term. Since someone here was making a list of the top CFS researchers (a very short list), I
    thought on top of that list should be whomever is running NIH ---- and that person is Francis S. Collins, MD PHD.

    For awhile, it appeared he was interested, when he attended a meeting focused on XMRV and sat in the
    front row. Has that interest waned because of problems replicating that research? I don't know --- but
    still, I believe we should be contacting him. Over a million people are sick with this disease, and, on a
    good day, we can name maybe 6 people who are researching this disease! God bless them, but this is
    Outrageous!

    Important things to know about Dr. Collins:
    1. prevously head of the National Human Genome Research Office, involved in announcing a working
    draft of the human genome along with rival, Craig Vetner;
    2. the recipient of numerous awardeds and honors, including election to the Institute of Medicine, the
    National Academy of Sciences, a Kilby International Award, the National Medal of Science (2008);. the
    Presidential Medal of Freedom (2007).

    He likes to play guitar and started a rock band with other NIH scientists. He likes to ride motorcycles. Dr. Collins has appeared to the Colbert Report at least twice. It would be nice if Steve Colbert interviewed him on what's happening at the agency with respect to Chronic Fatigue Syndrome.

    Of note Dr. Collins has penned a book on religion and science, describing science as an "opportunity to
    worship."

    Dr. Collins is VERY POPULAR WITH THE U.S. CONGRESS, whch is one of the reasons we want to continue to have him on our side.

    While there may be others online here who have very sophisticated ideas of what to say and do re: activism -- and I welcome their input --- when I found the contact information for Dr. Collins, I wanted to make sure that the group had the information so that it could be used on a regular basis. We are desperate for science to step in and help solve our problems!

    N.B.: If you are ever looking for contact info for an employee at NIH or the CDC, Google HHS and employee, and it will bring up boxes to fill in, which should then bring up their mailing address, telephone, and email address. Information that can frequently be virtually impossible to obtain!

    I suggest we all write letters telling Dr. Collins how this disease affects us, and how little research is occurring given the large numbers and disability that it causes.

    Best to all,
    Chloe

    Dr. Collins' contact info:


    Last name Collins
    First name Francis
    Middle name S
    Agency NIH
    Organization DHHS/NIH/OD
    Job title Director NIH
    Building 1
    Room 126
    Duty station Bethesda MD 20892
    Phone 301.496.2433
    Internet e-mail Francis.Collins@nih.hhs.gov
     

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