May 2009
CFIDSLink—e-News 

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In This Issue

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

Dear Friend,
On April 27, advocates gathered in person at the CDC and by telephone to give input for a five-year research plan being developed to guide future efforts. The guidance was uniformly direct and at times condemning. Association testimony reflected concerns it has shared with CDC multiple times. From the Desk of Kim McCleary offers more detail about the meeting and the Association's "reform" efforts over the past 20 months.

Research Matters

Investigator Profiles
This year the Association will be supporting six important research studies. Links to profiles of two more investigators, Dr. Marvin Medow of New York Medical College and Dr. Bud Mishra of New York University, are provided below. You can find the other four profiles and catch up with all the latest news on our research program at http://www.cfids.org/about/acceleratecfsresearch.asp.

Meet Dr. Marvin Medow>>
Meet Dr. Bud Mishra>>

Recent Studies Recapped
The Association's scientific director, Dr. Suzanne Vernon, summarizes three important studies published in recent weeks. Abstracts for two others are also provided. Read more>>

Association Applies for Stimulus Funding
Dr. Vernon has formed two separate research groups with multiple investigators and institutions to apply for stimulus funding under the Department of Defense and NIH. The studies, if approved, will focus on CFS-like illness that follows mandatory vaccinations in service members and the genetic susceptibility and intestinal microbiome of patients with CFS, fibromyalgia, irritable bowel syndrome and interstitial cystitis. Stay tuned for more news as these grants undergo review.

Treatment Matters

The ABCs of EFAs
CFS researchers in Japan and many other groups have reported the benefits of essential fatty acids (EFAs) in managing some symptoms of CFS. What are EFAs and what role do they play in fighting CFS and many other diseases? Answers to those questions and more...>>

Swine Flu Guidance
Concerns about swine flu have prompted many CFS patients to ask if they should take special precautions. Unfortunately, no one yet knows enough about H1N1 virus to say with certainty if CFS puts you at greater risk. For now, CFS experts advise taking the same precautions as others and seeking medical attention if your flu-like symptoms intensify. General information & resources at http://www.cdc.gov/swineflu/

You Matter
Different Countries, Similar Experiences CFS is a global illness, made all the more apparent by the large contingent of international researchers who presented studies at the IACFS/ME conference in March. This month, our personal storie comes from a CFS patients who shares what it's like to live with CFS in Japan.

Hidehito's story>>

"And the survey says..."
Results of the final reader survey in our 3-part series helped us better understand what types of coping and personal stories matter most to you. Check out the results here>>

Please participate in a research-oriented survey, that asks questions designed to harness patients' own connections between triggering factors and their symptoms at https://www.surveymonkey.com/s.aspx?sm=cD1ghc3rGJRm00uAxoNqdA_3d_3d

25 Random Things
This format for sharing personal information swept through Facebook, garnering fans, detractors and copycats. Association president & CEO Kim McCleary used it as a way to convey information about CFS to friends. We share her list here in a print-and-go format for you to use>>

Advocacy Counts

DHHS CFS Committee Meets This Month
The federal CFS Advisory Committee (CFSAC) to new Secretary of Health Kathleen Sebelius will meet in Washington, D.C. on May 27-28 in Washington, D.C. Read the formal notice here>>

Opportunity for More Input
After the CFSAC meeting on May 27-28, CDC intends to post its five-year draft plan on its website and has invited additional stakeholder input until June 30. Sign up for our Grassroots Action Center http://capwiz.com/cfids/mlm/signup/ alerts to be sure you learn about this and other important opportunities to influence policy decisions.

CDC Solicits Input and Gets Plenty
See "From the Desk of Kim McCleary" for a report on the recent public meeting at CDC.

News & Notes

Next Stop for "Faces"
"The Faces of CFS" portrait exhibit travels next to Wauwatosa, Wis., a suburb of Milwaukee. It will be at the Center Court at Mayfair (2500 N. Mayfair Road) from Monday, May 11, through Sunday, May 17. In June, "Faces" travels to Westfield Meriden Mall in Meriden, Conn., from June 15-21. Visit the photo exhibit page for more details.

"Show Me State" Shows A Lot of CFS Info
Media coverage of "The Faces of CFS" exhibit in St. Louis was terrific. Check out the recap here of newspaper, television, radio and online stories about CFS>>

May Media Heating Up
With media outreach to the Milwaukee area and coverage in other communities, take advantage of these opportunities to hear more about CFS in the news>>