January 11, 2012| Vol.1, No.1
In This Issue
FROM THE CEO'S DESK
NEW @ RESEARCH1ST
JOURNAL HIGHLIGHTS @ RESEARCH1ST
OTHER RESEARCH NEWS
POLICY MATTERS
CATALYSTS IN ACTION
OTHER NEWS
A NEW LOOK!
The CFIDS Association has put research first to end the life-altering disab=
ility, stigma and isolation of CFS. Our Research1st website and blog (http:=
//www.research1st.com) is your home on the Internet for current, reliable i=
nformation about CFS research. We've given our monthly e-newsletter a new l=
ook and a new name to streamline the information resources we provide to th=
e community. This month, CFIDSLink becomes Research1st News (http://www.res=
earch1st.com/wp-content/uploads/2012/01/Vol-1-No-1.pdf). Until the transiti=
on is complete, the email address used to send our newsletter will remain c=
fidslink@cfids.org. Visit the archive (http://www.research1st.com/news-arch=
ive/) to read past issues and to sign up to receive upcoming issues by emai=
l.
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FROM THE CEO'S DESK
This fall, you helped us respond to five different challenges and one "bonu=
s" issued by donors to help inspire year-end giving. We are grateful to eve=
ryone who responded and helped us secure a total of $1,217,177 in support o=
f The Catalyst Fund. Read more at http://www.research1st.com/2012/01/11/ftd=
o-jan12/.
~~~~~~~~~~~~~~~~~~~
NEW @ RESEARCH1st
LOOKING FORWARD: RESEARCH INITIATIVES IN 2012: We've recapped what to look =
forward to in 2012 from research initiatives announced in 2011. Read more a=
t http://bit.ly/tcr7gG.
PAIR OF RETRACTIONS ISSUED: On Dec. 23, Science editor-in-chief Bruce Alber=
ts issued a rare editorial retraction (http://www.research1st.com/2011/12/2=
2/retraction/) of the 2009 paper by Lombardi et al. that first linked CFS t=
o XMRV. On Monday, Dec. 26, the authors of the only other published paper s=
upporting this association retracted their study (http://www.research1st.co=
m/2011/12/26/pnas-retraction) from the Proceedings of the National Academy =
of Sciences.
XMRV attracted a lot of media attention in 2011, but other newsworthy stori=
es raised awareness too. Read more at http://bit.ly/uGGq7f.=20
We added 15 new posts since Dec. 1, with 164 posts since our Research1st bl=
og launched in late May. You can subscribe to email updates (http://feedbur=
ner.google.com/fb/a/mailverify?uri=3DResearch1st&loc=3Den_US) each time a n=
ew blog post is added.
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JOURNAL HIGHLIGHTS @ RESEARCH1st
Following are selected highlights from the published literature in Dec. 201=
1. Read more at http://www.research1st.com/promising-cfs-research-findings/=
%20.
MARKERS DIFFERENTIATE CFS FROM MS: A new study from the Light team at Univ.=
of Utah shows unique post-exercise markers in CFS compared to patients wit=
h MS and healthy controls. This study was funded in part by the CFIDS Assn.=
(Psychosomatic Medicine http://bit.ly/w3Wbtx, Dec. 30, 2011)
NO XMRV IN SPANISH PATIENT COHORT: From Arredondo et al. in Spain, a report=
of testing for XMRV in 1103 samples collected from people with CFS, FM, pr=
ostate cancer, HIV, HTLV, hepatitis B, hepatitis C, autoimmune disease and =
healthy blood donors. There was no evidence for XMRV in this cohort. (AIDS =
Research and Human Retroviruses http://bit.ly/rDivPi, Dec. 29, 2011)
NO MLV-RELATED VIRUSES IN 8 VACCINES: Researchers at the CDC, Blood Systems=
Research Institute and Univ. of Cal. at San Francisco report the results o=
f their PCR and deep sequencing tests of 8 live vaccines for MLVs. All were=
negative for XMRV and MLVs. This is the second published report finding no=
presence of these viruses in vaccines. (PLoS ONE http://bit.ly/vJ9MjF, Dec=
. 22, 2011)
MODERATE EXERCISE BETTER CHALLENGE FOR DETECTING CFS: A new study published=
by Dane Cook, PhD, and colleagues at UW-Madison, shows that sustained subm=
aximal exercise challenge demonstrates differences between CFS, CFS+FM and =
healthy controls better than a short-duration maximal exercise challenge. (=
Medicine & Science in Sports & Exercise http://bit.ly/sKe1nc, Dec. 12, 2011=
)
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OTHER RESEARCH NEWS
Dr. W. Ian Lipkin of Columbia University's Center for Infection and Immunit=
y posted a message on Dec. 28 about the multi-center study he is coordinati=
ng for the NIH to address the question of whether a retrovirus is associate=
d with CFS/ME. Read more at http://cii.columbia.edu/blog.htm?cid=3DCalAzy.
Margaret Anderson, executive director of Faster Cures, spotlights the top 1=
0 medical research trends to watch in 2012 in this Huffington Post article.=
Read more at http://www.huffingtonpost.com/margaret-anderson/medical-resea=
rch_b_1174636.html. Check out our slideshow, "Transforming Research," and y=
ou'll see the CFIDS Association is leading these trends! View now at http:/=
/www.research1st.com/2011/12/02/transforming-research/.
The New England Journal of Medicine turns 200 this year. They've posted an =
interactive timeline of medical discoveries, 1812-2012. Check it out at htt=
p://nejm200.nejm.org/timeline/?emp=3Dmarcom.
An article from Genome Web (free registration) provides a good summary of s=
tudies that have found some lab materials to be contaminated with mouse DNA=
, leading to the possibility of false positive results in viral testing. Re=
ad more at http://bit.ly/zZgvCc.
The fall 2011 issue of the IACFS/ME's Bulletin includes an article by Tom K=
indlon of the Irish ME/CFS Association reporting the harms associated with =
CBT/GET and the book of abstracts from the IACFS/ME conference held in Otta=
wa in Sept. Read more at http://bit.ly/s5rCsr.
~~~~~~~~~~~~~~~~~~~
POLICY MATTERS
The CFIDS Association is a member of the Alliance for Taxpayer Access that =
supports barrier-free access to publicly funded research. The Research Work=
s Act, introduced in Congress on Dec. 16, 2011, threatens open access and t=
he NIH public access policy. This Wired article explains the legislation an=
d scientists' reaction to it. Read more at http://bit.ly/x7HF2K. PLoS found=
er Michael Eisen published an op-ed in the NY Times about this pending legi=
slation. Read more at http://www.nytimes.com/2012/01/11/opinion/research-bo=
ught-then-paid-for.html?_r=3D3&ref=3Dopinion. =20
~~~~~~~~~~~~~~~~~~~
CATALYSTS IN ACTION
We have been honored to share stories about our Catalysts, supporters of Th=
e Catalyst Fund http://www.cfids.org/about/thecatalystfund.asp. In science,=
catalysts are substances that change the rate of chemical reactions. "Posi=
tive" catalysts speed a particular reaction. For the CFIDS Association, Cat=
alysts speed transformation through their support of our research program. =
Meet two more of our Catalysts, both of whom join the Association's Board o=
f Directors this year:
* Beth Garfield, J.D., got sick in 1985 while on vacation. It took four yea=
rs to get a diagnosis of CFS, but she also found a treatment that offered r=
elief for 22 years. A relapse this February gave her reason to get involved=
again. "Even for people who do well for years, CFS is always there - and t=
here's always the possibility of a relapse," she says. "We can either give =
in to it and live our lives with CFS, or we can fight to find a cure. For m=
e, the choice is clear." Meet Beth at http://www.cfids.org/about/catalyst-b=
eth.asp.
* Christine Williams, M.Ed., got sick in August 2008, "I just woke up one m=
orning with a terrible, flu-like illness - fever, chills, sore throat, swol=
len glands. It was the middle of the summer and I just assumed I'd get well=
but I never felt good again." She appreciates what she calls the organizat=
ion's "pragmatic" approach to narrowing the focus to research, viewing it a=
s a way to move the research forward and to educate and link the medical co=
mmunity to CFS. Meet Christine at http://www.cfids.org/about/catalyst-chris=
.asp.
~~~~~~~~~~~~~~~~~~~
OTHER NEWS
We are so fortunate that Laura Hillenbrand openly shares her struggle with =
CFS in interviews like this one published Dec. 21, 2011 in "The Daily Beast=
." Thank you, Laura! Read more at http://bit.ly/u4KHCX.
294 individuals made donations eligible for entry in the "20/20 Bonus" (htt=
p://www.research1st.com/2011/12/21/2020-bonus/) offered by Laura Hillenbran=
d to spur year-end giving to the CFIDS Association. We have drawn the winne=
rs of 20 rare signed copies of Unbroken and are contacting them now to get =
permission to include their names in the announcement. Stay tuned for that =
news!
17-year-old Elodie Lafosse will carry the Olympic torch. Elodie has CFS and=
won a writing competition sponsored by Coca-Cola to earn the honor. Read m=
ore at http://bit.ly/uSd7Qi.
"This Week in Virology," one of the top science podcasts on iTunes, has cov=
ered CFS and XMRV numerous times over the past two years. The XMRV story le=
d episodes 164 and 165. Host Dr. Vincent Racaniello is a member of the Asso=
ciation's Scientific Advisory Board (http://www.research1st.com/2011/06/10/=
scientific-advisory-board-announced/). Check out TWiV at http://www.twiv.tv=
/2012/01/08/twiv-165-the-email-zone/.
Llewellyn King, host of the PBS program, "The White House Chronicle," start=
ed the year with a blog post on Salon about CFS, "In 2012 without care and =
cure." (http://open.salon.com/blog/llewellyn_king/2012/01/02/mecfs_into_201=
2_without_cure_or_care) Mr. King has also produced several short videos abo=
ut CFS, posted to the MECFS Alert channel (http://www.youtube.com/user/MECF=
SAlert) on YouTube.
We're grateful for the support of all the individuals, families and organiz=
ations who made year-end donations to the Association. Our work is off to a=
brisk start in 2012 and we need your support year-round to continue the mo=
mentum. Why not make the CFIDS Association your first charitable donation o=
f 2012? Our secure online donation site (https://donate.cfids.org/PayPalCCD=
onation/Default.aspx?var=3DDonate&Source=3DCFIDSHeader_Donate) is ready 24/=
7. Thank you!
*******************************
The CFIDS Association of America
working to make CFS widely understood, diagnosable, curable and preventable
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interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
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