August 2009
CFIDSLink—e-News 

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CFIDSLink is e-mailed monthly free of charge to all those interested. Click here to sign up for this electronic newsletter.

In This Issue

From the CEO
Research Matters
Treatment Matters
Advocacy Counts
You Matter
News & Notes

From the CEO's Desk

We're hearing from readers about our new SolveCFS publication, with positive feedback and constructive critiques. CEO Kim McCleary provides some ideas about places to locate content you might be missing from the Chronicle format.

Research Matters

Association-funded researchers continue marking progress with peer-reviewed publications. In July, Dr. Ben Katz was the lead author on an article published in Pediatrics about CFS following acute Epstein-Barr virus (EBV) infection. His patient group is also being studied by Dr. Gordon Broderick.

Another study just out 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.

1,200 patients participated in our online Symptom Survey. Dr. Suzanne Vernon presents some early results of what respondents said about factors they believe made them sick and factors that contribute to their symptoms over time.

Treatment Matters

Several published studies highlight the negative effects of exertion on CFS patients.
Learning to pace activity is a key strategy to reduce the push-crash cycle of overactivity and relapse. It may also help reduce spikes of certain chemicals in the body that provoke symptoms. Bruce Campbell, PhD, shares ways to identify and maximize the energy you have.

Conserving energy in every day tasks can help reserve your energy for more enjoyable activities. Here's a list of tips from a past issue of the CFIDS Chronicle.

Advocacy Counts

This month, members of Congress will be back in home districts/states and many will hold "town meetings" or "listening sessions" for constituents. Take advantage of local opportunities to get CFS on the record.

The bill that funds medical research is the largest non-defense spending bill considered by Congress. Click here to read language about CFS programs just passed by the Senate.

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.

You Matter

Stories from two women in Japan, Ms. Kazue Hirano and Ms. Motoko Habara, illustrate how similar their experiences are to Americans living with CFS.

We invited Association Facebook fans to share their favorite memory aids with readers.
Here are some tips for keeping track of appointments, meds and other daily tasks.

This month we invite readers to help us fine-tune our content based on your life circumstances, experiences and opinions. Please complete the 25-item survey at https://www.surveymonkey.com/s.aspx?sm=pvjQeneeargHHDiKsXojjQ_3d_3d.
Only one response per computer; the survey will close on August 31. Responses are completely anonymous.

News & Notes

SolveCFS, our new print publication, was mailed to donors and members on June 22.
You can request a copy be mailed to you by sending a message to solvecfs@cfids.org, or you can read it (and recent updates) online.

The "Faces of CFS" traveling exhibit has three stops this fall. Check out the dates and locations for upcoming venues near Detroit, Nashville and San Diego.

A decision on approval for Ampligen has been delayed again due to staffing issues at the Food & Drug Administration (FDA). According to a July 22 report, the drug's manufacturer expects to receive word on the application to market the drug for CFS this fall. If approved, it will be the first for CFS.

We're updating our H1N1 guide as new info is issued. CDC is making recommendations about the flu vacine that prioritize people with chronic conditions.