Wednesday, August 5, 2009

August CFIDS Link

August 2009

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.
http://www.cfids.org/cfidslink/2009/080501.asp

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. http://www.cfids.org/cfidslink/2009/080502.asp

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. http://www.cfids.org/cfidslink/2009/080503.asp

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. http://www.cfids.org/cfidslink/2009/080504.asp

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. http://www.cfids.org/cfidslink/2009/080505.pdf

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. http://www.cfids.org/cfidslink/2009/080506.asp

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. http://www.cfids.org/cfidslink/2008/070907.asp

The bill that funds medical research is the largest non-defense spending bill considered
by Congress. Click here http://www.cfids.org/advocacy/fy10-passed-senate-language.pdf 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. http://capwiz.com/cfids/issues/alert/?alertid=13738316&queueid=3648391941

You Matter

Stories from two women in Japan, Ms. Kazue Hirano http://www.cfids.org/cfidslink/2009/080507.asp and Ms. Motoko Haraba http://www.cfids.org/cfidslink/2009/080508.asp, 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. http://www.cfids.org/cfidslink/2009/080509.asp

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 mailto:solvecfs@cfids.org
or you can read it (and recent updates) online. http://www.cfids.org/solvecfs/ss09.asp 

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. http://www.cfids.org/cfidslink/2009/080510.asp

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  [http://rs6.net/tn.jsp?et=1102655793565&s=19178&e=001TGpnmmabwT0LQ7Bdfp7KwKhTsJPVa5fGAUM66vqF31EcWxda-XjHx5J6xitvwTfJgoqVpVDa_O_Isr58b5Ga0zkGwuj8FlBoaiHdfg6oj3zJ21Hf34G6b2gN7ng6XXTnwScVwqm-SLXZP_sh13AXSg==] as new info is issued. CDC is making recommendations about the flu vaccine that prioritize people with chronic conditions.
http://www.cfids.org/cfidslink/2009/070110.asp

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Our Mission:
For CFS to be widely understood, diagnosable,curable and preventable.

Our Strategy:
To stimulate research aimed at the early detection, objective diagnosis and effective
treatment of CFS through expanded public, private and commercial investment.

Our Core Values:
To lead with integrity, innovation and purpose.
 


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