Background: A group of us discussed what the patient community could to do advocate for governmental change for ME/CFS in the post-IOM era. We decided to create a project, which could appeal to people with a wide-range of opinions on the IOM report. We asked the question: Despite our differences, what are our common goals?
One of the answers was a research funding letter. The letter is near complete.
Feedback is now needed below for the second letter about ME/CFS Patients' Access to Doctors.
Also really needed are people to help get the project over the finish line: feedback on this Doctor Access letter, other help with planning and logistics of getting the project completed and small tasks along the way. Let me know if you'd like to pitch in.
I'm currently looking into how to automate our sending letters to congress, with a cc to the health agencies. I've contacted @JenB to look into how her upcoming #MEAction can help. I don't know how often she visits PR. If anyone is in touch with her and can let her know, it would be of great help. The automation tool will determine how we can send the letters and may influence if we need to add intros to each. Automating the sending process means that patients, family and friends can send their letters with one or a few clicks. The ease of the process may help get more patients to be able to send letters.
My rough draft of the Doctor Access Letter (without intro) is in the next post.
Since I took the usual late-night spot of this other advocacy thread: please support the Daily Vote To Help Nat'l ME/FM Action Network Win $2,000, too.
One of the answers was a research funding letter. The letter is near complete.
Feedback is now needed below for the second letter about ME/CFS Patients' Access to Doctors.
Also really needed are people to help get the project over the finish line: feedback on this Doctor Access letter, other help with planning and logistics of getting the project completed and small tasks along the way. Let me know if you'd like to pitch in.
I'm currently looking into how to automate our sending letters to congress, with a cc to the health agencies. I've contacted @JenB to look into how her upcoming #MEAction can help. I don't know how often she visits PR. If anyone is in touch with her and can let her know, it would be of great help. The automation tool will determine how we can send the letters and may influence if we need to add intros to each. Automating the sending process means that patients, family and friends can send their letters with one or a few clicks. The ease of the process may help get more patients to be able to send letters.
My rough draft of the Doctor Access Letter (without intro) is in the next post.
Since I took the usual late-night spot of this other advocacy thread: please support the Daily Vote To Help Nat'l ME/FM Action Network Win $2,000, too.
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