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.

• CFS Linked to XMRV Virus
  A study published in the Oct. 8 issue of Science links CFS to XMRV, a retrovirus associated with prostate cancer. Read more about it and find recently added links to other resources.


• Scientific director Dr. Suzanne Vernon "xplains" the XMRV paper and next steps to understand the role of XMRV in CFS.
• Stay informed on H1N1.
• Q&A from the National Cancer Institute about XMRV.
• The CFS Advisory Committee met Oct. 29-30. Read a summary or watch the videocast.
• Read a report on the recent CFS research meeting at Banbury Center
• Media coverage of CFS has been constant over the past month, with hundreds of news outlets reporting on XMRV as well as other stories about general aspects of the condition resulting from the Association's continuous media outreach. Check out all the latest media stories.

• Please support the Association's annual fund campaign, by visiting our new microsite, www.solvecfs.org uploading your photo, sharing your story and making a tax-deductible gift to sustain our important research and policy efforts.
• The CFIDS Association is now on twitter and has a YouTube channel featuring its original four-minute video, What Would You Do?" Other videos, including CFS patient Wilhelmina Jenkins describing cognitive impairment in CFS and "favorites" from others on YouTube, can be found at on our SolveCFS channel.
• Dr. Donnica Moore, a nationally respected women's health expert, appeared on NBC's "Good Morning America" on Sept. 24 to discuss CFS in a six-minute segment.
• Study in the Journal of Pain by Drs. Alan and Kathy Light may identify a blood biomarker for a subset of CFS patients. Dr. Suzanne Vernon describes the study and its exciting findings.
• The CFIDS Association has joined the Alliance for Taxpayer Access as part of its effort to "free the data" on CFS that has been created by CDC and other agencies using public funds. Ask your U.S. Senators to support the Federal Research Public Access Act.  

• Decision on Ampligen Will Wait Until Fall
  The Food and Drug Administration (FDA) was expected to render a decision by mid-June on Hemispherx Biopharma's application for approval to market Ampligen as a treatment for CFS. In a July 22, 2009 article, the Philadelphia Business Journal reported that CEO Dr. William Carter said staffing problems at FDA will delay a decision until fall 2009. Ampligen is an immunomodulatory drug that has been studied as a CFS treatment for more than twenty years. If granted, the approval will be FDA's first for CFS. Learn more about Ampligen at http://en.wikipedia.org/wiki/Ampligen.

• Association receives four stars!
  The Association is pleased to announce we received a four-star rating from Charity Navigator for the second year in a row.
  
  Charity Navigator, America's premier independent charity evaluator, helps charitable givers make intelligent giving decisions by providing in-depth, objective ratings and analysis of the financial health of America's largest charities. Please click on the logo to review more information on the Association’s four star rating.
  
  
• 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 November 6, 2009