Nov. 23, 2011
FROM THE CEO'S DESK
TOP OF THE NEWS
MORE FROM RESEARCH1ST
YOU MATTER
TAKE THE CHALLENGE AND TRIPLE YOUR IMPACT!
FROM THE CEO'S DESK
On behalf of all of us at the CFIDS Association of America, I wish you and =
your loved ones a restful and restorative Thanksgiving holiday. We are grat=
eful for the support of this vibrant community and for the shared commitmen=
t to our research-focused mission. - Kim McCleary, President & CEO
~~~~~~~~~~~~~~~~~~~~~~~
TOP OF THE NEWS
XMRV and its possible association with CFS has garnered headlines, hopes an=
d controversy for the past two years. The story has taken some unexpected t=
urns, but the most recent news reflects twists seldom seen in scientific ci=
rcles.
The Whittemore Peterson Institute (WPI) that led the research team first re=
porting an association dismissed its popular research director, Dr. Judy Mi=
kovits, in late September. At about the same time, Science magazine launche=
d an investigation of possible misrepresentation of data in the original 20=
09 publication. Action is still pending.
On Nov. 4, the WPI filed a civil suit against Mikovits over research-relate=
d property that had been missing since the date of her dismissal. She was a=
rrested on Nov. 18 in Calif. on felony charges of possession of stolen prop=
erty and unlawful taking of computer data, equipment, supplies or other com=
puter-related property. An affidavit filed on Nov. 21 by Max Pfost, a gradu=
ate student who worked under her supervision at WPI, states that he stole l=
aboratory notebooks from WPI at Mikovits' request the day after she was fir=
ed and concealed them before giving them to her in mid-October. Held withou=
t bond until her court appearance on Nov. 22, Mikovits was released that ev=
ening. The case is set to resume on Dec. 19.
This story has received major coverage from several media outlets, notably =
the Chicago Tribune where news of Pfost's admission broke yesterday afterno=
on. Science magazine has covered it at each step, often through ScienceInsi=
der, a breaking news blog. Retraction Watch, NatureNews, The Scientist and =
other publications have tracked developments closely, too. We've kept our "=
New Twists in the XMRV Story" post on Research1st.com up-to-date since Oct.=
5. You'll find all the latest news and links there now. Read more at http:=
//www.research1st.com/2011/11/19/new-twists-in-the-xmrv-story/.
The high-profile split at the Whittemore Peterson Institute, the investigat=
ion by Science and ensuing legal actions are of deep concern to many in the=
patient and scientific communities. Because XMRV raised hope for better ca=
re, Dr. Mikovits and the WPI have both attracted considerable support that =
is now being tested as details of civil and criminal charges are made publi=
c. We remain concerned for the well-being of all who are affected by this d=
ispute and hope that the various investigations will yield an equitable res=
olution. The CFIDS Association maintains its focus on research to improve t=
he diagnosis and treatment of CFS, and efforts to end the life-altering dis=
ability, stigma and isolation CFS imposes.
~~~~~~~~~~~~~~~~~~~~~~~
MORE FROM RESEARCH1ST
The National Institutes of Health issued two new funding opportunity announ=
cements for ME/CFS on Nov. 18, 2011. Kim McCleary describes the nature of t=
he announcements and the process by which researchers apply for NIH support=
. Read more at http://www.research1st.com/2011/11/20/nih-issues-new-pas/.
Dr. Marc Williams of Intermountain Health Care discusses the importance of =
translational research to ensuring insurance benefits for complex disorders=
such as CFS. Read more at http://www.research1st.com/2011/11/22/insurance-=
conundrum/.
Jennie Spotila, J.D., summarizes the Nov. 8-9, 2011 meeting of the federal =
CFS Advisory Committee. Read more at http://www.research1st.com/2011/11/15/=
cfsac-mtg-summary/.
Staci Stevens and Dr. Christopher Snell of the Pacific Fatigue Lab share th=
eir approach to testing for post-exertional relapse in CFS that can help do=
cument illness and disability. Read more at http://www.research1st.com/2011=
/11/18/pfl-testing/.
Next week on Research1st we'll feature research updates from our most recen=
t grantees and other news about the next phase of our research program. We'=
ve added 10 new posts in November and posted scores of replies to comments.=
You can subscribe to email updates (http://feedburner.google.com/fb/a/mail=
verify?uri=3DResearch1st&loc=3Den_US) each time a new blog post is added.
~~~~~~~~~~~~~~~~~~~~~~~
YOU MATTER
As you prepare for Thanksgiving and the start of the holiday season, this p=
ractical advice from Toni Bernhard, J.D., a person with CFS and author of H=
ow to Be Sick and a blog at Psychology Today, may help you communicate with=
loved ones about your limitations during this busy time of year. Read more=
at http://bit.ly/v4e1Fw.
~~~~~~~~~~~~~~~~~~~~~~~
TAKE THE CHALLENGE AND TRIPLE YOUR IMPACT!
Thanks to a challenge grant from the McGrath Family Foundation, for the nex=
t two weeks online donations made to the CFIDS Association's Catalyst Fund =
will be TRIPLED to help raise a total of $30,000 from Link readers and thos=
e who participate with us through Facebook, Twitter and Research1st. Learn =
more about this special opportunity to make a 3-for-1 charitable gift and m=
ake your donation today! Read more at http://www.research1st.com/2011/11/23=
/triple-your-impact/.
*******************************
The CFIDS Association of America
working to make CFS widely understood, diagnosable, curable and preventable
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