AngelM
Senior Member
- Messages
- 150
- Location
- Oklahoma City
i am not sure if this is the proper forum for this suggestion, but I am interested in making quality CFIDS care available to more than just those who are lucky enough to live near a CFIDS medical provider. To that end, I propose that the fundraising community consider seeking donations for the purpose of building two “hospitality houses” for use the use of CFIDS patients and families who cannot afford the cost of travel to an appointment.
One of the many “side effects” of CFIDS is that the endless search for help can easily bankrupt a patient, especially if he or she has been forced to spend years going from one unenlightenef specialist after another. Currently, the majority of revommended CFIDS specialists are located in New York City and Northern California, two of the most expensive areas of the country. If CFIDS patients had a low-cost housing option that included transportation to and from a clinic, they could more easily afford to travel to these areas.
Side note: My daughter was diagnosed with Myasthenia Gravis in 2009 and we traveled from San Diego, CA, to the UNC medical center in Durham, NC, to see a MG specialist for her treatment, which included surgery. While she recuperated and completed the necessary follow-up appointments with her doctors, we lived at the nearby SECU Family House, a beautiful facility with clean, inexpensive rooms, a large fully-stocked community kitchen, several comfy living areas eithe fireplaces and big screen TVs, a library, large porch overlooking a golf course, and a support staff available 24-7. An SECU House is manned by volunteers, and most of the food and transportation is donated by the nearby business community. For myself and my daughter the SECU House was a miracle.
Since enjoying such a positive experience in North Carolina, I have often wondered why there are not more SECU Houses, especially in areas where the cost of living precludes sick people from getting the specialized care they need.
Following is a link to the SECU House website: https://www.secufamilyhouse.org/staying-here
The site will give you a better idea of what this non-profit organization is about, how it benefits not just medical patients, but the entire community. Finding funding is a challenge, but perhaps making CFIDS care more accessible to patients of all income levels would be a worthy goal.
One of the many “side effects” of CFIDS is that the endless search for help can easily bankrupt a patient, especially if he or she has been forced to spend years going from one unenlightenef specialist after another. Currently, the majority of revommended CFIDS specialists are located in New York City and Northern California, two of the most expensive areas of the country. If CFIDS patients had a low-cost housing option that included transportation to and from a clinic, they could more easily afford to travel to these areas.
Side note: My daughter was diagnosed with Myasthenia Gravis in 2009 and we traveled from San Diego, CA, to the UNC medical center in Durham, NC, to see a MG specialist for her treatment, which included surgery. While she recuperated and completed the necessary follow-up appointments with her doctors, we lived at the nearby SECU Family House, a beautiful facility with clean, inexpensive rooms, a large fully-stocked community kitchen, several comfy living areas eithe fireplaces and big screen TVs, a library, large porch overlooking a golf course, and a support staff available 24-7. An SECU House is manned by volunteers, and most of the food and transportation is donated by the nearby business community. For myself and my daughter the SECU House was a miracle.
Since enjoying such a positive experience in North Carolina, I have often wondered why there are not more SECU Houses, especially in areas where the cost of living precludes sick people from getting the specialized care they need.
Following is a link to the SECU House website: https://www.secufamilyhouse.org/staying-here
The site will give you a better idea of what this non-profit organization is about, how it benefits not just medical patients, but the entire community. Finding funding is a challenge, but perhaps making CFIDS care more accessible to patients of all income levels would be a worthy goal.