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SECU CFIDS Family House

Discussion in 'Fundraising' started by AngelM, Jul 17, 2018.

  1. AngelM

    AngelM

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    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.
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    @AngelM First, I hope that your daughter's MG is much improved and thank you for sharing that story. I have found that most University Hospitals have housing for the families of patients who have traveled from out of town. The University Medical Center in my city has a "House" like this but it is for any patient's family from out of town and is not dependent on their diagnosis or treatment.

    I like your ideas but was curious if you were wanting to start housing for the patients themselves (which would provide caregiver or other services) or for the families (who are presumed to be healthy so the housing is more similar to a hotel)? I agree that housing (in general) but specifically for those who are ill and need to travel to see doctors is sorely lacking. I have no grand ideas how to fix the issue but definitely support your ideas!
     
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  3. AngelM

    AngelM

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    I get carried away sometimes with my grand ideas. But there are so many inherent problems with CFIDS, in addition to the obvious ones, that need to be addressed. For example, I’ve been trying to begin a CFIDS support group in Oklahoma City, and have had no luck so far. The joke is that CFIDS victims can’t have a support group because they are too tired to participate. But a FaceTime support group is better than nothing at all. Another problem is the lack of access to CFIDS specialists in most areas of the country. Getting a diagnosis after years of being told that your very obvious and measurable physical symptoms are imagined is a major factor in coping with CFIDS. I know I cried with joy when the illness I had suspected for years was finally confirmed. But so many people are left in limbo because they cannot see a specialist who is truly knowledgeable enough to make a CFIDS diagnosis. And that doesn’t seem fair.

    There has to be a solution that will allow more sick patients to see a specialist, and that solution, at least for most of us, means traveling far from home, which like the support group is a bit of a joke —“How can a person who is too tired to get out of bed, unable to work, and with little to no financial resources, possibly travel thousands of miles to see an expensive specialist?” So I thought of the SECU House, but there are probably more realistic options.

    In answer to your question, The SECU House in Durham was specifically built for out-of-town patients in recovery after discharge from hospital, rather than for family members of a hospitalized patient. One family member was allowed to stay in the room with the patient. We needed to be near the hospital for a period of two weeks in case of emergency, as well as, for my daughter to keep follow up appointments with her neurologist and his surgical team. What amazed me most was the volunteers from Durham who provided food, transportation, and entertainment to the residents on an almost daily basis. That allowed some patients and their family member(s) to manage with little to no out-of-pocket food and transportation cost. We chose to pay for our meals and to rent a car rather than use the donated transportation. But paying for meals was almost impossible because various restaurants and volunteer organizations took turns serving gourmet meals in the community kitchen/dining room, and everyone was encouraged to attend.

    My goal for CFIDS victims would be to come up with a plan, supported by the CFIDS Foundation (Association?) that would allow patients to more easily travel out of state to see a specialist. If I lived in an area with a number of excellent or, at the very least, knowledgeable physicians, (which sadly I do not), I would gladly volunteer my guest bedroom, transportation and meals to an out-of-town patient who could not easily afford a hotel or taxi fare to keep an appointment. I’m sure there are others who would do the same. This solution would rely on the time and organizational skills of a third party. But it is something to consider.

    A down-sized version of the SECU model might be possible. Purchase of a large house or similar residential facility that could operate as a non-profit and could offer rooms and transportation for a low cost to CFIDS patients. Hopefully, volunteers could defray the cost by donating food and time to the project.

    Another idea is a travel fund established for the use of out of town patients of limited income. However, from my experience, by necessity “giving money away” means paid administrators, office staff, and mountains of paperwork, to the point that and the cost of legal oversight usually eats up most of the donations.

    Sorry this is so long. My children become angry at me for being too “wordy,” and I get after my English comp students for overwriting, but it is a hard habit to break.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    I do, too, and I am trying to figure out a way that I can "pay back" the entire hidden illness community across the world who has helped me over the last five years while I was very sick. Now that I am better, I want to use my social work background to contribute to this community. I don't know how yet but am very interested in all kinds of ideas.

    Please forgive this question, and I should know the answer after posting on PR for 4+ years, but how is "CFIDS" different from ME/CFS? Is it another name for the same illness or does it use a different set of diagnostic criteria? I thought I knew all the acronyms but this one confused me!
     
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  5. AngelM

    AngelM

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    CFIDS is just another name for Chronic Fatigue Syndrome. Another “inherent” problem with this illness is it really doesn’t have a name. CFS, ME, CFIDS, ME/CFIDS? These are all interchangeable and very confusing. And yet, I keep hearing that coming up with a designated name that describes the disorder without diminishing it is still being considered. Maybe the people who name diseases need get their act together and settle on a name we can all relate to. I’ve also heard neuroimmune disorder, chronic mononucleosis, and, of course, the famous “yuppie flu.” I’m sure there are more.
     
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