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Letters to Congress: Doctor Access. Need Feedback & Help.

Discussion in 'Advocacy Projects' started by oceiv, Apr 28, 2015.

  1. oceiv

    oceiv Senior Member

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    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.
     
    Last edited: Apr 29, 2015
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  2. oceiv

    oceiv Senior Member

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    Here is my rough draft of the letter to congress (with cc to health agencies). Your input, feedback and suggestions would be very helpful.

    Edit: I'm correcting minor errors as I catch them.
     
    Last edited: Apr 28, 2015
  3. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    What an excellent letter!

    May I use this letter myself in my own country with some modifications (if I ever get around to it)? This problem is all over and isn't just an American issue. I'm currently like bashing my head against the whole system here and your letter could be useful.

    I also like how you are just focusing on one main issue in the letter as I think it makes the point trying to be made all clearer. In my own advocacy efforts, I've often found I've overwhelmed the people I've been trying to get to understand by bringing too many issues up at once.
     
    Last edited: Apr 28, 2015
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  4. oceiv

    oceiv Senior Member

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    Thank you, @taniaaust1 . :) Of course, you may use this letter. In fact, it would make me quite happy. You could replace the ADA with an equivalent law in your country. Hopefully, once we get the automation issues answered, a whole bunch of us can send letters at once.
     
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  5. Oredogg

    Oredogg

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    Oregon
    You might consider also including something re: the economic burden, as citing the IOM report:

    "ME/CFS patients experience loss of productivity and high medical costs that contribute to a total economic burden of $17 to $24 billion annually. "

    Much of this could be attributed to lack of access to CFS literate health practicianers. And quite frankly, money talks. Improving access, and getting earlier, more accurate diagnoses and treatments, will help streamline care and reduce the number of useless and even harmful doctor visits, unnecessary treatments and inappropriate medications.
     
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  6. oceiv

    oceiv Senior Member

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    Good suggestion, @Oredogg . Your first point is in the research letter. We have to find out if, with the automation tool, we can customize letters and if the letters need to be sent separately or if they can be sent together if people so wish.

    I like your phrasing on saving medical costs. Congress does focus often on saving medical costs (sometimes to patients' detriment, but this time it could be to our benefit).
     
  7. aimossy

    aimossy Senior Member

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    info@meaction.net is the email address for ME Action I think. @oceiv I think they want people emailing them there regarding anything to do with ME Action.
     
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  8. oceiv

    oceiv Senior Member

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    Thanks, @aimossy . We're also looking into any other tools to automate congressional/governmental contact and allow for users to customize their letters. If anyone out there knows more about these automated tools, please post here or send me a PM.

    Once we send out the letter, people like @taniaaust1 and others can customize a version for their own countries, if they wish. But in the unlikely chance that groups or organizations want to use all or part of the letter, please contact me first.
     

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