Hospital Wants Input From Chronic Fatigue Syndrome and Fibromyalgia Patients on Possible NEID Center

Posted by Cort Johnson

An Health Services provider is considering opening up an NEID Center to serve people with CFS, FM and Lyme disease

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.)

Click Here to Go To the Survey



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