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.

• 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 at http://www.research1st.com/2011/12/09/one-and-done-no-more/. 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.
• Selected highlights from the published literature: Nov. 2011. See more at http://www.research1st.com/promising-cfs-research-findings/.
• 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.
• 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 reimbursement (http://www.research1st.com/2011/11/22/insurance-conundrum/) for services and procedures related to patient care. Andrew Kewley and Marc Williams, MD, recently penned guest posts on these topics.
• "Rituximab Trial Shows Promise" by Kim McCleary. Read more...
• "Observations on Rituximab's Early Success" by Dr. Gordon Broderick. Read more...
• "Media Blitz By Norway's TV2" by Kim McCleary. Read more...
• "Rituximab Basics" by Dr. John Sweetenham. Read more...
• With the hopeful news about new possibilities to treat CFS, here is easy-to-follow info about phases of clinical study of a medication, from Genentech's website. The study reported from Norway on rituximab (see links above) was a Phase II study. Additional Phase II studies are under way now.
• 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 December 9, 2011