JaimeS
Senior Member
- Messages
- 3,408
- Location
- Silicon Valley, CA
A small team at #MEAction (read: me, Paige, Stacy) is going to be working on a rough draft of a resources page for PWME. It would be amazing if you guys could paste the resources you have found to be most interesting, and tag other individuals who might be able to help locate the best tidbits.
This is what we're looking for right now:
1) General all - in - ones, like @Hip 's inestimable Road Map.
2) A good document that describes how to tell if you have ME or describes 'ME in a nutshell'.
3) Business-oriented resources for PWME, such as notes you can give to your physician, employer, or disability lawyer
4) Locations of ME-friendly clinicians of any specialty -- let's stop going to those who denigrate PWME! Please list their specialty / area of focus and location.
5) Places to go for support (of course, we're a little biased....) Local support groups are not just 'okay' but very desirable. So are groups on FB for specific things, maybe not necessarily directly ME-focused but peripherally related, like a forum for those with orthostatic intolerance, e.g.
6) Any other, similar pages that other advocacy organizations have made in the past that you think might be helpful as we create ours.
7) Pages here on Phoenix Rising (or other forums) that are considered generally invaluable by the community.
8) Online counseling services, debt help, good lawyers -- think outside the box. What have you needed or wished you had within the past year that a good resources page might have been able to provide?
Please include locations for 4 & 5 if you can; we are creating a map for PWME to find resources close to them, and we would love for it to grow into an invaluable tool! Please also rate the physicians listed there already, so that people can go to their doctor well-informed.
Even if you know for a fact that I know about a resource, if you have a ready link, please paste it in your reply. We are trying to spend one afternoon getting this rough draft together, and any help you can provide would be so appreciated.
Please respond by using the categories above, and consider #8 to be "other". That will help us collate the information in a meaningful way, very swiftly.
Thanks so much for all you guys ALREADY do to keep patients safe, well-informed, and in the best possible health they can be with this crappy illness. We will be gathering info through Sunday afternoon for the draft, but please feel free to keep posting and we will add to the page gradually.
Jaime
This is what we're looking for right now:
1) General all - in - ones, like @Hip 's inestimable Road Map.
2) A good document that describes how to tell if you have ME or describes 'ME in a nutshell'.
3) Business-oriented resources for PWME, such as notes you can give to your physician, employer, or disability lawyer
4) Locations of ME-friendly clinicians of any specialty -- let's stop going to those who denigrate PWME! Please list their specialty / area of focus and location.
5) Places to go for support (of course, we're a little biased....) Local support groups are not just 'okay' but very desirable. So are groups on FB for specific things, maybe not necessarily directly ME-focused but peripherally related, like a forum for those with orthostatic intolerance, e.g.
6) Any other, similar pages that other advocacy organizations have made in the past that you think might be helpful as we create ours.
7) Pages here on Phoenix Rising (or other forums) that are considered generally invaluable by the community.
8) Online counseling services, debt help, good lawyers -- think outside the box. What have you needed or wished you had within the past year that a good resources page might have been able to provide?
Please include locations for 4 & 5 if you can; we are creating a map for PWME to find resources close to them, and we would love for it to grow into an invaluable tool! Please also rate the physicians listed there already, so that people can go to their doctor well-informed.
Even if you know for a fact that I know about a resource, if you have a ready link, please paste it in your reply. We are trying to spend one afternoon getting this rough draft together, and any help you can provide would be so appreciated.
Please respond by using the categories above, and consider #8 to be "other". That will help us collate the information in a meaningful way, very swiftly.
Thanks so much for all you guys ALREADY do to keep patients safe, well-informed, and in the best possible health they can be with this crappy illness. We will be gathering info through Sunday afternoon for the draft, but please feel free to keep posting and we will add to the page gradually.
Jaime