December 2015, A Summary:
We have advocated locally, nationally and internationally for 20 years.
We have seen this disease go from Yuppie Flu to Chronic Fatigue Syndrome, to CFS/ME, to CFS/ME/SEID. We have lost friends, gained new ones and nurtured each other into an adjusted life style, grasping at threads of meaning and value.
What still remains is that thousands in Vermont alone suffer from this disease and it's multiple variations and these thousands are still unable to find a physician adequately trained to formulate a sound recovery program. Family structures require an accurate diagnosis to create a healing environment. Misdiagnoses guarantee lifelong illness and are all too common.
However, there is a future.
Education is the Key to Recovery.
My personal story is one of rebirth and renewal. After 17 years and from death's door, I was repaired, restored, and given back much of what I had lost. This is nothing shy of remarkable. I'm the luckiest man on the planet and my story should be understood medically and shared. Eight weeks after the heart surgery a fellow ME/CFS patient took one look at me and said,”I want what he got.” Everyone should get their life back. Ask me: email@example.com
Our web site needs to be rebuilt, consolidated and made responsive to all size devices. It's a new world. We have extensive materials that can significantly aid those in need, their families and their physicians. Viewers should be able to easily access this information from their phone, tablet, or desktop machine. Estimated cost: $3000
We have experienced marginal success with our scholarship program and it should be expanded. If ME/CFS is not adequately presented in the medical school, we should do it on our own and graduate young physicians with the proper background to effectively manage our patients. The scholarship should be of a large enough sum to capture their attention and share this program with the lay community. That we have to do this at all should be a headline.
Estimated cost: $5000
What is most exciting is a research program currently underway at the University of Vermont. A small pilot project has provided provocative results that suggest the presence of an immune response in some ME/CFS patients. Similar to Rheumatoid Arthritis (RA), recent preliminary studies in plasma samples from 25 ME/CFS patients revealed the presence of autoantibodies that recognize citrullinated proteins (proteins that have been modified from the native form by citrullination) in some of the patients. Although the levels of anti-citrullinated protein antibodies (ACPA) found in some ME/CFS patients were lower than those found in severe RA, they were clearly above background and were present only in some ME/CFS patients. ACPA are only present in a subset of RA patients. The isotype of the ACPA were also identified. Thus, while preliminary, the results from these studies are the first evidence for the potential existence of autoantibodies in ME/CFS, indicative of the presence of an inflammatory response which could in part mediate some of the symptoms observed in this disease. Future studies are planned to further investigate this new finding.
This pilot project was funded by the New Jersey ME/CFS Association. Our Vermont-based organization, ImmuneDysfunction.org, is soliciting funds to expand the study. Contact us for additional details: firstname.lastname@example.org
Estimated cost: $27,000
What is Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome? Researcher Dr. David Maughan of the University of Vermont, and Advocate Rik Carlson discuss the disease, it’s treatment, and the difficult politics surrounding this disease in particular. Listen to the podcast here: