What's New?

Wondering what's happening in the CFS community and what's new on our web-site? Here you'll find fresh content, from media alerts to just-published research to important public policy developments. Explore some of our latest additions below.

• OFFER 2010 Conference for Healthcare Providers and Patients: Advances in the Science and Treatment of Fibromyalgia and Chronic Fatigue. The conference will be held on September 11, 2010 from 8:30am - 4:30pm at the Marriott Hotel, downtown, Salt Lake City, UT. More information about the conference and how to register can be found on their website at http://offerutah.org/conferences.htm.
• We need your help to make the SolveCFS BioBank a robust research resource! Patients with a physician's diagnosis of CFS, post-exertional malaise and cognitive difficulties can now enroll for future studies under new criteria for General Enrollment.
• Upcoming Webinars:
  
  
  • Managing Orthostatic Intolerance by Peter Rowe, M.D.: September 7, 2010 at 12:30p.m. (EDT)
  
  
  • CFS & The Viral Connection by Dr. Anthony Komaroff: September 16 at 12:30 p.m. (EDT)
  
  
  • Comorbid Conditions: The Alphabet Soup of CFS by Morris Papernik, MD: October 21, 12:00 p.m. (EDT).
    
  • “Doc Talk:” Communicating with Your Health Care Professional by Lucinda Bateman, MD: November 11, 12:00 p.m. (EDT).
    
  • Minimizing Relapses: Pacing Yourself Through the Holidays by Bruce Campbell, Ph.D: November 18, 1:00 p.m. (EDT).
    
    
  
  You can find the recordings and slides for past webinars on our website and on YouTube.
• Multiple media articles about CFS have appeared in the Wall Street Journal, Science and other high-profile national outlets. In addition to the blood safety announcement from AABB, a dispute over XMRV studies from three federal agencies attracted sustained attention. Here's the evolving story about those stories. Keep up with latest news and links to studies and analysis.
• The latest XMRV study from researchers at the Centers for Disease Control & Prevention, Koch Institute in Germany and Blood Systems Research Institute failed to find XMRV in the 51 cases, 56 healthy controls and 41 blood donors tested by various methods. Read "Blood from a Stone," from our scientific director, Suzanne D. Vernon, PhD. Here's a link to the study, published in Retrovirology on July 1.
• Gastrointestinal symptoms are frequent in CFS, but don't get as much attention as they should. Here's an article on treatment with probiotics, reprinted with permission from the International Foundation for Functional Disorders (IFFGD.org) (c) 2010 IFFGD.
• The inaugural 24 Hours in the Enchanted Forest: A Race to SolveCFS (24HITEF) was a tremendous success! HITEF is a mountain bike endurance event held for the first time on June 19-20 near Gallup, New Mexico. Here's a report on the event from organizer Claudia Goodell with background about her CFS experience and her inspiration for creating the event with help from other volunteers.

• The National Institutes of Health recently awarded two new grants for CFS research. Both explore infectious agents and their role(s) in CFS.
• The "Campaign to End Chronic Pain in Women"
  Visit the website, view the short film, "Through the Maze," and read the detailed report and policy recommendations.
• In response to questions posed on our Facebook page, in discussion forums and through e-mail, postal mail and phone calls, we've posted an Association FAQ page; we'll update it regularly to reflect the dynamic community dialogue.

• Med Alert: Adverse events have recently been reported following use of medications prescribed for some CFS symptoms. Links to information on the following drugs are available:
  • Voluntary Recall of Morphine Sulfate 60mg Issued by Ethex Corp.
    Ethex Corporation notified healthcare professionals of a voluntary recall of a single lot of morphine sulfate 60 mg extended release tablets (Lot No. 91762) due to a report of a tablet with twice the appropriate thickness. Oversized tablets may contain as much as two times the labeled level of active morphine sulfate. The lot was distributed by Ethex Corporation under an 'Ethex" label between April 16th and April 27th of 2008.
    
    An over dosage or over strength of opioids such as morphine have life-threatening consequences, including respiratory depression (difficulty or lack of breathing) and low blood pressure. Due to their illness, many patients for whom this product is prescribed are more likely to be highly debilitated with reduced strength or energy. Their impairment may make it more difficult to determine that a tablet is oversized than an unimpaired individual.
    
    For questions about the recall, consumers are encouraged to call their physician, pharmacist or other healthcare provider. For any questions related to this action, please contact Ethex Customer Service (representatives are available Monday through Friday, 8 am to 5 pm CST):
    
    Telephone 1-800-321-1705
    Fax 1- 314-646-3751
    Email customer-service@ethex.com
    
    For more information see http://www.fda.gov/oc/po/firmrecalls/ethex06_08.html.
  • Provigil (Modafinil)
  • Fentanyl transdermal system (Patch)
  • Dangerous or even fatal skin reactions (Stevens Johnson syndrome and toxic epidermal necrolysis), that can be caused by carbamazepine therapy, are significantly more common in patients with a particular human leukocyte antigen (HLA) allele, HLA-B*1502. This allele occurs almost exclusively in patients with ancestry across broad areas of Asia, including South Asian Indians. Genetic tests for HLA-B*1502 are already available. Patients with ancestry from areas in which HLA-B*1502 is present should be screened for the HLA-B*1502 allele before starting treatment with carbamazepine. If they test positive, carbamazepine should not be started unless the expected benefit clearly outweighs the increased risk of serious skin reactions. Patients who have been taking carbamazepine for more than a few months without developing skin reactions are at low risk of these events ever developing from carbamazepine. This is true for patients of any ethnicity or genotype, including patients positive for HLA-B*1502. This new safety information will be reflected in updated product labeling.
  • Carbamazepine is FDA-approved for treatment of epilepsy, mania/bipolar disorder, and neuropathic pain. SJS and TEN are serious blistering reactions of the skin and mucous membranes that can be permanently disabling or fatal. This medication is distributed under the names Carbatrol, Equetro, Tegretol, and generic carbamazepine. Because people with CFS may be treated for neuropathic pain, and some have unusual reactions to medications, we are sharing this information so that you are aware of potential adverse reactions and may wish to alert your health care provider/prescriber.

Last updated on July 21, 2010