WPI seeks your help in continuing to advocate on behalf of all patients with complex neuro-immune diseases such as ME and CFS. These diseases have been reported in outbreaks and specific groups of people within close contact of each other, providing strong evidence for an infectious origin. These diseases have many impacts such as:
Loss of jobs and health insurance: Patients with these disabling diseases often lose their family support and the ability to work along with their medical insurance. They are a vulnerable population with too few resources to access appropriate medical care that could allow them to recover and lead a useful and productive life.
Too few doctors: Most patients have difficulty finding doctors who understand or are capable of providing relief for the chronic and severe symptoms of disease.
Too little medical consensus among physicians: Most physicians lack the medical tools to diagnose and treat patients with these complex diseases.
One of WPI's top priorities is to increase in levels of research funding of ME and CFS and other neuro-immune diseases. Funding for this group of complex diseases has remained at the lowest levels at the NIH and CDC, despite the fact that they impact tens of millions around the U.S. Diseases such as these often cause lifelong disability and suffering, yet they have no FDA approved biomarkers of disease and no FDA approved treatments. It is critical that we continue the exciting discovery of the underlying disease processes by supporting continued research into the association of pathogens with neuro-immune diseases. Fully understanding the underlying disease process will lead to the development of much needed diagnostic tools for physicians and treatments for patients.
Another of WPI’s top priorities is to urge the establishment of translational research consortiums and clinical Centers of Excellence to provide clinical research trials and effective patient treatment. Centers of Excellence, which are staffed with knowledgeable physicians, can provide novel research-based treatments in a much more timely and effective manner.
Sending letters and making phone calls is an important part of every non-profit's advocacy efforts. Although we use key personnel to represent us at the federal level, we need the help of everyone interested in effecting change for neuro-immune disease research. One of the ways you can support this important effort is by writing to your state and federal legislators. The links below will provide you with the contact information for your state.
We want to help you write your message, so we have provided a sample letter with key points to use when writing your letter. Remember to share your story in the letter, so the impact of these diseases on your life and those you love can be understood.
Senators of the 112th Congress (U.S. Senate)
Write Your Representative (U.S. House of Representatives)