- Meet Brian Smith and Pam Nadeau, two courageous individuals who have broadly shared their moving stories of how CFS has irrevocably altered their lives. At 28, Brian has lived nearly half his life with CFS. Pam’s three children all have CFS. Chances are, if you’re reading this, their stories will resonate with you.
- I recently attended the International Symposium on Viruses in Chronic Fatigue Syndrome and Postviral Fatigue, held in Baltimore, Maryland. This was a satellite meeting immediately following the 6th International Conference on HHV-6 and 7—organized by the HHV-6 Foundation and cosponsored by a number of organizations including the CFIDS Association.
View from HHV-6 and Virus Meetings
- The TMJ (temporomandibular joint) Association invited me to participate in their Fifth Scientific Meeting, held at the Federation of American Societies for Experimental Biology in Bethesda, Maryland, from June 1-3, 2008. The objective of the meeting was to determine if studies of disorders often comorbid with TMJ could reveal common mechanisms of disease. I was invited to discuss CFS because CFS it’s often comorbid with TMJ disorders.
Comorbid Conditions Receive Focus
- Functional somatic syndromes comprise a group of disorders that are primarily symptom-based, multisystemic in presentation and may involve alterations in mind-brain-body interactions. They are distinct from psychiatric disorders. Yet Functional somatic and psychiatric disorders share clinical features, such as fatigue, pain, sleep disturbance and cognitive impairment and can often occur together.
New Findings about Comorbid Conditions
- Many members of Congress are campaigning for re-election and will be more visible in their home communities between now and November 4. The time between August 11 and September 5 is congressional recess,” when members are back in their states and districts specifically so they can meet with their constituents.
Summer Is Prime Time To Be Heard: Connecting Locally with Your Member of Congress
- Representatives Jan Schakowsky (D-IL-9) and Sue Myrick (R-NC-9) have circulated a letter to their colleagues in the U.S. House of Representatives asking them to help secure renewal of the charter for the Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC). The CFSAC is one of very few disease-specific advisory committees that exists to make recommendations to Secretary of Health Mike Leavitt. Its charter is set to expire on September 5, 2008.
Advocacy Archives: Advocacy Alert
- The first-ever national public awareness campaign for CFS is still going strong. Eighteen months after the official November 2006 launch, the campaign continues to generate considerable media attention, educate Americans and change attitudes about this life-altering illness.
Public Awareness Campaign Results
- I’m Pam Nadeau, and I’m the mother of three children. They all have CFS. I know the helpless feeling of having a child sick with an illness that has no cure. But for all three kids to face that same struggle? It’s unimaginable. And yet we do our best to manage.
The Campaign to Accelerate CFS Research
- My wife, Susan, forwarded to me a solicitation from the May 2008 CFIDSLink, asking for people in the CFS community to share our stories. Here’s mine in a nutshell. My marriage to a longtime CFS sufferer has been the catalyst and vehicle for my personal transformation, and for that I feel no end of gratitude.
Leave a Reply