is a community empowerment program for people with a often disabling disorder called ‘chronic fatigue syndrome’ which leaves many with special economic, social and emotional needs. This Google Mashup map project will help address those needs by allowing people with chronic fatigue syndrome to look on a map of their local area and
- communicate with other patients to break up the isolation in the disorder
- find and review physicians, disability attorneys and neuropsychologists
- request help for various needs such as house cleanup, yard work, driving to get groceries, going to doctors appointments, cooking, etc.
- find support group events
- rate health food and other retail stores including budget stores
- find suitable living arrangements for those with special needs
- find clinical trials and research studies underway in their area.
Phoenix Rising will enlist philanthropic organizations to help address patients needs. The map will assist researchers in finding patients for clinical trials and will a help build a constituency for advocacy – something that is sorely needed in a disorder with low federal research funding.
This program may be used to aid other poorly served and misunderstood illness communities such as people with fibromyalgia, IBS, interstitial cystitis, etc.
The planning stages of this program are complete. We are looking for volunteers and resources to assist us in building it.
(please mark your donation for the ‘Community Rising’ Project)
A Deeper Cut
- Patients Meeting Patients – Patients can contact each other if they have similar interests, are engaged in similar projects, want to help out with each others needs, wish to go out to dinner, to the movies, etc..Patients can give their name. email address phone, etc. as well as age, sex, single/married, (available?), functional status, years ill, seeing X physician, needs (clean house, walk dog, take to doctor, etc. … a dating service could be tied in here….
- Finding Good Physicians – find ME/’CFS physicians in the area color coded perhaps to types of physicians (MDs, Alternative Health, Behavioral, etc.). Click on the practitioner and get address, speciality, short synopsis of patients reviews, a link to the full physician review program and a Review This Physician link. The Physician Review program is nearing completion.
- Finding Knowledgeable Disability Attorneys and Neuropsychologists
- Patient Getting Their Needs Met – patients outline their needs (house cleaning, yardwork, dog walking, baby sitting, transportation to store/doctor’s office) and request assistance. Phoenix Rising also enlists national philanthropic organizations to help patients.
- Volunteers/Pro bono help -from professionals to non-professionals, volunteers can put themselves on the map, listing their hours available and skills
- Support Groups – Support Group locations are highlighted, Click on one and go to a WIKI page containing information about the group, its meeting times, address and local events. The Tab also contains a Create a Support Group Feature – which leads to a page where people can add their name to a list of people who want to be in a support group plus info on how to do that.. Meetup sites are included.
- Family Members/Caregivers – put themselves on the map to communicate with other caregivers, create projects, etc.
- Mind/body/stress reduction – opportunities for stress reduction from yoga to meditation to spiritual centers are listed, locations provided and reviewed.
- Resources – rate health food stores, farmers markets….a special section for budget stores???
- Advocacy – patients can band together to support local advocacy efforts; ultimately simultaneous nationwide protests could be facilitated using the map.
- Projects – a portal for local projects..
- Clinical trials – patients in local areas may present a data mine for local research projects
- Research Foundations – addresses of research foundations, eg. CAA, WPI, Simarron etc. are highlighted…..