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.

• Advocates Respond to CDC's Research Plan
  When CDC unveiled its draft 5-year plan for CFS research in May, it asked for input. A detailed response from the CFIDS Association and reminders to advocates generated at least 665 letters endorsing the Association's critique and recommendations.
• Orthostatic Intolerance (OI)
  CFS symptoms may be due to reduced blood flow and low blood volume. Read about recent research studies, medications and practical tips to relieve the symptoms.


• SolveCFS Debuts!
  The Association's new print publication was mailed to supporters on June 22. To request a copy, send your mailing address to solvecfs@cfids.org. We are eager for your feedback!
• Your Guide to H1N1 Flu
  Last month the World Health Organization declared that H1N1 flu reached the highest pandemic phase. While severity of this flu has been mild to moderate and the death rate low so far, its pattern is cause for caution among those with chronic conditions. Here's some information gathered from reputable sources.
• Decision on Ampligen Deadline Missed
  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. The manufacturer has not released any new information about the application, and FDA is unable to comment. 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.

• Reports from London Conference
  The 4th Invest in ME conference provided a backdrop for Dr. Kenny De Meirleir and PROTEA Biopharma to announce "the true nature of CFS" and a $25 home test kit. Read more about the May 28-29 events and the controversy over the press announcement.

• CFS Advisory Committee (CFSAC) Recommends Change
  The federal CFSAC appointed by the Secretary of Health has recommended that the U.S. Centers for Disease Control & Prevention (CDC) change its leadership to achieve progress in CFS research and education. Read more here. For the first time, the CFSAC meeting was broadcast over the Internet and the recording has been archived. With a free download of RealPlayer 8.0, you can watch the proceedings. Click here and scroll to find the May 27-28 sessions.

• Virtual Lobby Day 2009
  For each of the past 5 years, the CFIDS Association has enlisted help from advocates through its Virtual Lobby Day to contact elected officials, health policy leaders and the media about CFS. We’ve updated our Alerts to reflec the CFSAC’s recommendations, CDC’s call for input on its research plan. Phase 2 of our 5th Annual Virtual Lobby Day continues.
• Find The CFIDS Association of America on Facebook!
  1,263 fans have found us on the social networking site, generating a positive sense of community and sharing. Learn more about how to find us on Facebook at http://www.cfids.org/cfidslink/2009/030410.asp.
• Conferences and Meetings
  Visit the Association's conferences and meetings page at http://www.cfids.org/community/conf-meetings-interest.asp to learn about upcoming events that may be in your area.
• 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. Noted in the announcement was “Receiving four out of a possible four stars indicates that your organization excels, as compared to other charities in America, in successfully managing the finances of your organization in an efficient and effective manner. This consistency in your rating is an exceptional feat, especially given the economic challenges many charities have had to face in the last year.” “Only 18% of the charities we’ve rated have received at least 2 consecutive 4-star evaluations, indicating that the CFIDS Association consistently executes its mission in a fiscally responsible way, and outperforms most other charities in America.”
  
  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 July 1, 2009