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December 2011
CFIDSLink—e-Newsletter
Back to 2011 Listing
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In This Issue
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 transform research through its Catalyst Fund and we're working hard to build support for the next phase of our work together. Read more...
RESEARCH1st
Selected highlights from the published literature: Nov. 2011. See more at http://www.research1st.com/promising-cfs-research-findings/.
Regional grey and white matter volumetric changes in ME (CFS): a voxel-based morphometry 3-T MRI study: Puri et al. of Hammersmith Hospital (U.K.) evaluated 26 CFS patients and 26 matched controls and concluded, "These data support the hypothesis that significant neuroanatomical changes occur in CFS, and are consistent with the complaint of impaired memory that is common in this illness; they also suggest that subtle abnormalities in visual processing, and discrepancies between intended actions and consequent movements, may occur in CFS." (British Journal of Radiology, Nov. 29, 2011) Read more...
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=26) and patients with OI (alone) (n=11) may have smaller hearts and reduced cardiac performance. 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...
No evidence for XMRV nucleic acids, infectious virus or anti-XMRV antibodies in Canadian patients with CFS: Steffen and colleagues at several Canadian and U.S. institutions tested for XMRV and MLVs using several testing methods in blood and plasma collected from 58 CFS patients and 57 healthy controls. They found no evidence of XMRV or MLVs. (PLoS ONE, Nov. 14, 2011; full text) Read more.. .
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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 healthy controls and found that subjects with "ME/CFS have reduced flow-mediated dilatation in the brachial artery and reduced post-occlusive reactive hyperemia in the forearm skin microcirculation. These responses are both endothelium-mediated via an increase in shear stress... and the results therefore lend further support to the hypothesis that endothelial function is impaired in ME/CFS, both in large vessels and in the microcirculation." (International Journal of Cardiology, Nov. 10, 2011)
Symptom fluctuations and daily physical activity in patients with CFS: A case-control study: Meeus and colleagues at Vrije Universiteit Brussel (Belgium) studied 67 women with CFS for six days. They found that the more patients with CFS are sedentary and the better activity is dispersed, the fewer symptoms and variations they experience on the same and next day. Inversely, more symptoms and variability is experienced when patients were more active that day or the day before. This paper supports the common practice of pacing used by CFS patients to reduce symptom flares brought on by over-activity. (Archives of Physical Medicine and Rehabilitation, Nov. 2011) Read more...
MORE FROM RESEARCH1st
David Tuller, MPH, who has written about CFS for the New York Times, published a well-researched and comprehensive article, "CFS and the CDC: A long, tangled tale," on virology blog, hosted by Dr. Vincent Racaniello. We've provided a link to that must-read article, David's interview with Dr. Racaniello on "This Week in Virology" and nine other articles about CFS written by David. Read more...
We posted 10 updates about the Association's research program, including progress reports from our six most recent grantees, a log of scientific director Dr. Suzanne Vernon's contributions over the year, newsworthy highlights from 2011, a description of what's next with your support and a wrap-up slideshow. 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 in the field of CFS. In all, we've added 21 new posts in Nov. and Dec. (so far), with 155 posts since the Research1st blog launched in late May. You can subscribe to email updates each time a new blog post is added.
POLICY MATTERS
The Department of Health and Human Services (DHHS) CFS Advisory Committee met on Nov. 8-9, 2011, in Washington, D.C. Jennifer M. Spotila, J.D., wrote this summary of the meeting; her testimony as well as statements from CEO Kim McCleary and former AHRQ staff member Christine Williams are available on Research1st. DHHS has posted video recordings and links to other materials.
Two policy topics of frequent discussion are the burden of illness imposed by CFS and better reimbursement for services and procedures related to patient care. Andrew Kewley and Marc Williams, MD, recently penned guest posts on these topics.
CATALYST NEWS
Research grants funded by the Association are helping to expand the number of studies exploring objective diagnostics and effective treatments. Our grantees have attracted nearly $5 million in new awards based on pilot data collected 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/tE0PTP. We invite you to be a Catalyst for research! Gifts of all sizes are needed to help meet the ambitious $2 million goal. Thank you for your support!
Donor Lee Meisel, MD, JD, MPH, has extended a challenge to help inspire first-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, please do so today. If you're already an Association supporter, please share this 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 check box to our on-line donation form and will also check donations as they're received and will post updates to the tally.
We've posted profiles of a dozen Catalysts whose support is inspiring others to join as Catalysts. Meet these 12 Catalysts and watch for more stories being added frequently.
OTHER NEWS
The Mason Foundation (of Australia) has awarded grants totaling $831,037 over four years to researchers at Bond University (Australia) and their collaborators at Stanford University and Sierra Internal Medicine (both in the U.S.) to continue their research. "Essentially, we're looking at the pathology in order to gain insight into the pathway of how CFS develops," said Dr. Sonya Marshall-Gradisnik, one of the lead investigators. Read more...
We have continued updating information about the legal dispute between the Whittemore Peterson Institute (WPI) and its former research director, Dr. Judy Mikovits. The WPI has stated that most of its property has been returned, although civil and criminal cases against Dr. Mikovits are still proceeding. According to attorney Scott Freeman, Dr. Mikovits maintains her innocence and they plan an aggressive defense. Read more...
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