A Health Service provider may want you (gasp)! Yes, it’s true. After all the cold shoulders and denials of coverage, etc. a health services system in the Southeastern United States (to remain unnamed) wants to determine whether it makes sense for them to open an neuroendocrineimmune center focusing on ME/CFS, fibromyalgia, lyme disease, etc. To that end they’re asking you to participate in a survey.
How did this turn of events come about? Tina Tidmore, a journalist, advocate and person with CFS, came into contact with a politician who has one of these disorders and knows the CEO of a health care/hospital system. He arranged for Tina, the politician, a nurse with one of these disorders, the CEO and an operations manager to met to talk about the health services system, ME/CFS and its allied disorders. The CEO took interest and decided to launch a survey with PANDORA to help determine if an NEID center was a viable option for them.
When I talked to her Tina emphasized something Marly Silverman, the founder of PANDORA, has been saying for years; that we significantly increase our power and effectiveness when we advocate for these disorders together. Separately we don’t have the numbers to attract much interest; ME/CFS is too small for a hospital to open a CFS treatment center but when you throw FM and Lyme in there – you start generating some numbers a CEO might take interest in. Tina noted that Dr. Klimas’ Center is studying Gulf War Illness and ME/CFS and the new Canada Center with Dr. Bested is focused on Complex Chronic Diseases (ME/CFS, FM, Lyme Disease).
The hospital wants to determine if a Center would be financially viable for them. They’re shooting for a 1,000 responses from the Southeast and across the US. (Be sure to answer the question about how you pay based on how you pay for most of your costs; ie try not to answer ‘Other’) ….
A hospital based NEID program would be a very good thing to have, particularly for the folks in the Southeast who have few options. If you live in the US please take this short survey. If you have a child with one of these disorders please take the survey as well. (If you are from Alabama and have taken a similar survey please take this survey as well.)