August 3, 2011
FROM THE CEO'S DESK
RESEARCH NEWS
JOURNAL HIGHLIGHTS
POLICY MATTERS
TREATMENT MATTERS
NEWS & EVENTS
FROM THE CEO'S DESK
Nature is the world's leading general science periodical. Last month,
five Nature Publishing Group journals featured articles about CFS. CEO
Kim McCleary looks at NPG's coverage of CFS in "Nature's Call."
(http://www.research1st.com/2011/08/03/natures-call/)
RESEARCH NEWS
An independent consensus panel of international experts has proposed new
criteria for myalgic encephalomyelitis (ME). The panel recommends use of
this term and criteria as a replacement for CFS: "...it is more
appropriate and correct to use the term 'ME' because it indicates an
underlying pathophysiology." They propose one compulsory feature --
post-exertional neuroimmune exhaustion (PENE) -- plus seven symptoms
from three subdivided symptom clusters: neurological, immunological and
energy production/transport impairments. The criteria will be published
in the Journal of Internal Medicine and are intended for clinical and
research settings. There is sure to be more discussion about the
recommended change in both the name and criteria -- both have
potentially far-reaching consequences for research, policy and
education. Our Research1st summary
(http://www.research1st.com/2011/07/25/me-case-definition/) links to
Table 1 from the paper, which outlines the symptom criteria.
XMRV and its reported association with CFS has been the subject of 17
published studies, 15 of which have not found evidence of a link. The
latest results are documented in Diagnostic Microbiology and Infectious
Disease, published July 25. Keith Jerome at University of Washington and
colleagues tested a total of 85 samples from same-sex twin pairs
recruited to the Chronic Fatigue Twin Registry by Dedra Buchwald, MD.
Twin pairs in this cohort, one of whom has CFS (by 1994 Fukuda criteria)
and the other does not, have been studied extensively. The team used
four PCR assays to test banked samples for XMRV under blinded
conditions. Apart from one inconclusive result on a twin who does not
have CFS, XMRV was not found in any of the twins with CFS. The authors
conclude, "...our results do not appear to be consistent with the
original report of XMRV being present in 67 percent of patients with
CFS." We regularly update our XMRV overview
(http://www.cfids.org/xmrv/default.asp) and resource lists
(http://www.cfids.org/xmrv/resource-listing.asp).
Dr. Alan Light of the University of Utah defines the term "biomarker"
and describes how potential biomarkers are evaluated, a guest post on
Research1st.com, "Shedding Light on Biomarkers." (http://bit.ly/p3FxRC)
Dr. Light and colleagues published a study of potential biomarkers for
CFS
(http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potent
ial-cfs-biomarkers/) and FM in the Journal of Internal Medicine in May.
JOURNAL HIGHLIGHTS
Study Estimates Rates of ME/CFS in England, Compares Case Definitions:
The ME/CFS Observatory conducted a study of ME/CFS in three distinct
areas of England to determine prevalence, incidence and the ability of
three different definitions to detect CFS and ME/CFS. "The prevalence
rate of cases meeting the CDC-1994 definition was 0.19%, of cases
meeting the Canadian definition 0.11%, and of cases meeting [an
Epidemiological Case Definition devised for this study] 0.03%." The
paper concludes by reinforcing the burden represented by the illness
(regardless of definition) and the need to improve identification of
subgroups to strengthen research. "Both groups have high levels of need
for service provision, including health and social care. We suggest
combining the use of both the CDC-1994 and Canadian criteria for
ascertainment of ME/CFS cases, alongside careful clinical phenotyping of
study participants." (BMC Medicine,
(http://www.biomedcentral.com/content/pdf/1741-7015-9-91.pdf) July 28,
2011)
Magnetic Resonance Tagging Reveals Impaired Cardiac Function: Professor
Julia Newton's group at Newcastle University used a new method of
assessing the shape, structure and function of the heart in this study
of 12 CFS patients and 10 healthy controls. They found that compared to
controls, "CFS patients have markedly reduced cardiac mass and blood
pool volumes, particularly end diastolic volume: this results in
significant impairments in stroke volume and cardiac output compared to
controls." (Journal of Internal Medicine,
(http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02429.x/abs
tract) July 27, 2011; accepted article approved for publication, yet to
undergo copy-editing and proof correction.)
Journal highlights
(http://www.research1st.com/promising-cfs-research-findings) and links
to conference reports are updated regularly on our Research1st site.
Learn more about current research initiatives
(http://www.research1st.com/current-cfs-research/) too.
POLICY MATTERS
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice
and recommendations to the Secretary of Health and Human Services. There
are three upcoming vacancies on the committee and individuals,
organizations and institutions are encouraged to submit nominations. The
most recent set of recommendations has been posted to the CFSAC website.
An update (http://www.research1st.com/2011/07/27/cfsac-updates/) on our
Research1st site provides more details.
TREATMENT MATTERS
Sleep. It seems like it should be the most easily accomplished function
of daily life. But for millions, including people with CFS, healthy
sleep is elusive. Here are some resources
(http://www.research1st.com/2011/07/11/to-sleep-perchance/) from experts
to help you understand sleep and ways to improve the quality of your
sleep.
NEWS & EVENTS
A regular feature on our Research1st blog
(http://www.research1st.com/cfs-blog/) lists 5 "picks" selected by
researchers, physicians, policymakers, other professionals, patients,
advocates and caregivers. These picks represent articles, books,
websites, films, etc. that they have chosen as particularly interesting,
compelling or descriptive of science - either in general or in an area
in which they have an active interest. July 15th's picks
(http://www.research1st.com/2011/07/15/5-picks-for-15-july-2011/) came
from researchers funded by the Association. Dikoma Shungu also provided
an extended description for his selections about mitochondrial
dysfunction (http://www.research1st.com/2011/07/21/key-players-in-cfs/).
You can subscribe to new posts on Research1st by email
(http://feedburner.google.com/fb/a/mailverify?uri=3DResearch1st&loc=3Den_=
US)
. We hope you'll explore the site and join the conversation about
exciting developments in CFS research!
BioMed Central and Retrovirology's second biennial "Frontiers of
Retrovirology" (http://www.frontiers-of-retrovirology.com/) conference
will be held in Amsterdam, October 3-5, 2011.
The IACFS/ME will host the 10th International CFS/ME Research and
Clinical Conference in Ottawa, Canada, Sept. 22-25, 2011. The conference
theme is "Translating Evidence Into Practice." (http://www.iacfsme.org/)
*******************************
The CFIDS Association of America
working to make CFS widely understood, diagnosable, curable and
preventable
---------------------------------------------
Send posts to CO-CURE@listserv.nodak.edu
Unsubscribe at http://www.co-cure.org/unsub.htm
---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
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.
---------------------------------------------
