Dec. 9, 2011
FROM THE CEO'S DESK
RESEARCH1st
MORE FROM RESEARCH1st
POLICY MATTERS
CATALYST NEWS
OTHER NEWS
FROM THE CEO'S DESK
From living rooms to cyberspace, we've shared the message that the days of =
funding "one and done" studies are over. The Association is working to tran=
sform research through its Catalyst Fund (http://www.cfids.org/about/thecat=
alystfund.asp) and we're working hard to build support for the next phase o=
f our work together. Read more at http://www.research1st.com/2011/12/09/one=
-and-done-no-more/.
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RESEARCH1st
Selected highlights from the published literature: Nov. 2011. See more at h=
ttp://www.research1st.com/promising-cfs-research-findings/.
Regional grey and white matter volumetric changes in ME (CFS): a voxel-base=
d morphometry 3-T MRI study: Puri et al. of Hammersmith Hospital (U.K.) eva=
luated 26 CFS patients and 26 matched controls and concluded, "These data s=
upport the hypothesis that significant neuroanatomical changes occur in CFS=
, and are consistent with the complaint of impaired memory that is common i=
n this illness; they also suggest that subtle abnormalities in visual proce=
ssing, and discrepancies between intended actions and consequent movements,=
may occur in CFS." (British Journal of Radiology, Nov. 29, 2011) Read more=
at http://bit.ly/uvRj2n.
Small heart with low cardiac output for orthostatic intolerance in patients=
with CFS: From Miwa and Fujita at the Miwa Naika Clinic (Japan), a report =
that CFS patients with orthostatic intolerance (OI) (n=3D26) and patients w=
ith OI (alone) (n=3D11) may have smaller hearts and reduced cardiac perform=
ance. A small heart appears to be related to the genesis of OI and CFS via =
both cerebral and systemic hypoperfusion. Agreeing with other reports, CFS =
with OI seems to constitute a well-defined and predominant subgroup of CFS.=
(Journal of Clinical Cardiology, Nov. 28, 2011; full text) Read more at ht=
tp://onlinelibrary.wiley.com/doi/10.1002/clc.20962/full.
No evidence for XMRV nucleic acids, infectious virus or anti-XMRV antibodie=
s in Canadian patients with CFS: Steffen and colleagues at several Canadian=
and U.S. institutions tested for XMRV and MLVs using several testing metho=
ds in blood and plasma collected from 58 CFS patients and 57 healthy contro=
ls. They found no evidence of XMRV or MLVs. (PLoS ONE, Nov. 14, 2011; full =
text) Read more at http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjo=
urnal.pone.0027870.
Large and small artery endothelial dysfunction in CFS: David Newton et al, =
Univ. of Dundee (U.K.), studied 30 patients with CFS (Fukuda) and 27 health=
y controls and found that subjects with "ME/CFS have reduced flow-mediated =
dilatation in the brachial artery and reduced post-occlusive reactive hyper=
emia in the forearm skin microcirculation. These responses are both endothe=
lium-mediated via an increase in shear stress... and the results therefore =
lend further support to the hypothesis that endothelial function is impaire=
d in ME/CFS, both in large vessels and in the microcirculation." (Internati=
onal Journal of Cardiology, Nov. 10, 2011)
Symptom fluctuations and daily physical activity in patients with CFS: A ca=
se-control study: Meeus and colleagues at Vrije Universiteit Brussel (Belgi=
um) studied 67 women with CFS for six days. They found that the more patien=
ts with CFS are sedentary and the better activity is dispersed, the fewer s=
ymptoms and variations they experience on the same and next day. Inversely,=
more symptoms and variability is experienced when patients were more activ=
e that day or the day before. This paper supports the common practice of pa=
cing used by CFS patients to reduce symptom flares brought on by over-activ=
ity. (Archives of Physical Medicine and Rehabilitation, Nov. 2011) Read mor=
e at http://www.archives-pmr.org/article/S0003-9993%2811%2900417-5/abstract=
.
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MORE FROM RESEARCH1st
David Tuller, MPH, who has written about CFS for the New York Times, publis=
hed a well-researched and comprehensive article, "CFS and the CDC: A long, =
tangled tale," on virology blog, hosted by Dr. Vincent Racaniello. We've pr=
ovided a link to that must-read article, David's interview with Dr. Racanie=
llo on "This Week in Virology" and nine other articles about CFS written by=
David. Read more at http://www.research1st.com/2011/12/08/tuller-tells-it-=
like-it-is/.=20
We posted 10 updates about the Association's research program, including pr=
ogress reports from our six most recent grantees, a log of scientific direc=
tor Dr. Suzanne Vernon's contributions (http://www.research1st.com/2011/12/=
01/hi-fi/) over the year, newsworthy highlights from 2011 (http://www.resea=
rch1st.com/2011/12/02/newsworthy-highlights/), a description of what's next=
(http://www.research1st.com/2011/12/01/future/) with your support and a wr=
ap-up slideshow (http://www.research1st.com/2011/12/02/transforming-researc=
h/). You can find links to all these articles at http://www.research1st.com=
/2011/11/28/accelerate/.
We've updated information about a broad range of research initiatives (http=
://www.research1st.com/current-cfs-research/) in the field of CFS. In all, =
we've added 21 new posts in Nov. and Dec. (so far), with 155 posts since th=
e Research1st blog launched in late May. You can subscribe to email updates=
(http://feedburner.google.com/fb/a/mailverify?uri=3DResearch1st&loc=3Den_U=
S) each time a new blog post is added.
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POLICY MATTERS
The Department of Health and Human Services (DHHS) CFS Advisory Committee m=
et on Nov. 8-9, 2011, in Washington, D.C. Jennifer M. Spotila, J.D., wrote =
this summary (http://www.research1st.com/2011/11/15/cfsac-mtg-summary/) of =
the meeting; her testimony (http://www.research1st.com/2011/11/08/cfsac-spo=
tila/) as well as statements from CEO Kim McCleary (http://www.research1st.=
com/2011/11/08/cfsac-mccleary/) and former AHRQ staff member Christine Will=
iams (http://www.research1st.com/2011/11/09/cfsac-williams/) are available =
on Research1st. DHHS has posted video recordings and links (http://www.hhs.=
gov/advcomcfs/meetings/presentations/11082011.html) to other materials.
Two policy topics of frequent discussion are the burden of illness (http://=
www.research1st.com/2011/10/13/disease-burden/) imposed by CFS and better r=
eimbursement (http://www.research1st.com/2011/11/22/insurance-conundrum/) f=
or services and procedures related to patient care. Andrew Kewley and Marc =
Williams, MD, recently penned guest posts on these topics.
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CATALYST NEWS
Research grants funded by the Association are helping to expand the number =
of studies exploring objective diagnostics and effective treatments. Our gr=
antees have attracted nearly $5 million in new awards based on pilot data c=
ollected with the Association's support. Your contributions will help fuel =
the next phase of our research program. See what's next at http://bit.ly/tE=
0PTP. We invite you to be a Catalyst for research! Gifts of all sizes (http=
://bit.ly/ub5f3E) are needed to help meet the ambitious $2 million goal. Th=
ank you for your support!=20
Donor Lee Meisel, MD, JD, MPH, has extended a challenge to help inspire fir=
st-time gifts in support of the Association. He has offered a $10,000 bonus=
donation if we can attract 100 gifts (of any size) from new donors in the =
next 10 days. Help us secure Dr. Meisel's bonus donation! If you value the =
information you receive in CFIDSLink and have never made a gift before, ple=
ase do so today. If you're already an Association supporter, please share t=
his opportunity with family and friends. They are welcome to make a gift in=
your honor and we'll gratefully acknowledge you both! We've added a new ch=
eck box to our on-line donation form (http://bit.ly/2011fund) and will also=
check donations as they're received and will post updates to the tally.
We've posted profiles of a dozen Catalysts (http://www.cfids.org/about/thec=
atalystfund.asp) whose support is inspiring others to join as Catalysts. Me=
et these 12 Catalysts and watch for more stories being added frequently.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
OTHER NEWS
The Mason Foundation (of Australia) has awarded grants totaling $831,037 ov=
er four years to researchers at Bond University (Australia) and their colla=
borators at Stanford University and Sierra Internal Medicine (both in the U=
.S.) to continue their research. "Essentially, we're looking at the patholo=
gy in order to gain insight into the pathway of how CFS develops," said Dr.=
Sonya Marshall-Gradisnik, one of the lead investigators. Read more at http=
://www.bond.edu.au/about-bond/news-and-events/news/BD3_019855
We have continued updating information about the legal dispute between the =
Whittemore Peterson Institute (WPI) and its former research director, Dr. J=
udy Mikovits. The WPI has stated that most of its property has been returne=
d, although civil and criminal cases against Dr. Mikovits are still proceed=
ing. According to attorney Scott Freeman, Dr. Mikovits maintains her innoce=
nce and they plan an aggressive defense. Read more at http://www.research1s=
t.com/2011/11/19/new-twists-in-the-xmrv-story/.
*******************************
The CFIDS Association of America
working to make CFS widely understood, diagnosable, curable and preventable
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