Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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How about collecting good and descent projects/studies, we want to thank?!

Discussion in 'Advocacy Projects' started by DanME, Sep 9, 2014.

  1. DanME

    DanME Senior Member

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    The scientist and researchers, who take us seriously and conduct serious biomedical ME research, deserve to be thanked for their efforts!

    In another thread, we discussed the possibility to motivate researchers, who conducted serious biomedical ME research by writing them a "thank you letter" (or email). I really like the idea to give dedicated researchers, who take us seriously, positive feedback. And to tell them how important their work is for us!

    So what do we need for that?

    We have to collect studies (or defined projects), which deserve a a big thank you.

    We have to write and formulate a basic text, which can be rearranged from letter to letter.
    (an English native, please!) I think the letter should point out, how important their work is, how thankful we are to be taken seriously, how much we need new research projects to stay hopeful for our future and of course of what high quality their research is.

    We could give them the PhoenixRising Award for serious ME research (ok, I don't know what the PR team thinks about this idea, but it sounds cool).

    We could combine and cross this with every other social media platform (Facebook, Twitter etc.).

    Ok, throw your critic and doubts at me! :)
     
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  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I like the idea very much. One barrier to doing it has been how to do it, and lack of time and energy. If we can find out how and where to do it, and have a standard text that we can adapt as required, I am sure the good scientists will get much-needed encouragement. Maybe they could even use our feedback to press for approval and funding for further studies. If it wouldn't impress the standard funding bodies, it would still impress patients and carers to donate to crowdfunding projects.
     
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  3. DanME

    DanME Senior Member

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    I think we need a well written standard text, approved by everyone. It shouldn't be too hard to write one. I could do it, but I think a native is able to write a better and more nuanced text without my clunky grammar and wording. We could think about additions (like and award or an emotional video etc.).

    Once we have that, we have to collect good studies. We could go to a process, where our science brains on PR discuss the quality of the study and give green light for sending the letter (we discuss every study anyway).

    If we have a foundation, it wouldn't take much energy anymore to do that.
     
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  4. alex3619

    alex3619 Senior Member

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    We have sent thank you cards to researchers before, I think the last one was a group signed Lipkin card.
     
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  5. DanME

    DanME Senior Member

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    Great! Maybe we could send thank you cards/mails to smaller teams, too.
     
  6. catly

    catly Senior Member

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    I like the idea, but I'm not quite sure how to do accomplish it on this forum without information getting buried in threads. Maybe we could add something on the main page under resources for adovcay projects. There are already a couple of references there that I think fit as advocay.

    Maybe we could add a tab that provides links to researches who have have done, are doing or are planning to do studies that we think will advance the biological understanding, diagnosis, and treatment of the disease.

    We could link to websites, addresses (street, email, twitter) facebook pages and provide a sample thank you letter for people to use. It would be nice if we could update the resources with new information, but that might get to be too much.

    Maybe there could even be a section on twitter basics (I think there might be a thread on that somewhere).

    Anyway just some thoughts. I unfortunately don't know anything about website maintenance, so I don't know how hard it would be to do this. Maybe others can weigh in.
     
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  7. NK17

    NK17 Senior Member

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    Great idea @DanielBR!

    A spinoff could be an indie Patients' Award to researchers in the ME field (longstanding and newer ones).
     
    Last edited: Sep 9, 2014
  8. DanME

    DanME Senior Member

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    The Independent Patient's Award for ME Research sounds like a really good name.
    In Short IPAMER :)
     
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  9. NK17

    NK17 Senior Member

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    Let's put the IPAMER acronym to vote!
    We People with ME are quite democratic ;).
     
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  10. DanME

    DanME Senior Member

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    Yes, that would be wonderful. Maybe a Tap like "Top Research". We could include a small summery of the study and link to pubmed, the university and the the researchers. A sample letter sounds also wonderful.

    I don't know anything about website maintenance either. I just got excited by ideas.
     
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  11. DanME

    DanME Senior Member

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    Imagine in 15 years researchers will be really proud to get the IPAMER and a 5000$ reward with it. ;)
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @NK17 I love it and vote yes!
     
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    IPAMER is OK but I wonder if anyone can come up with something snappier and more memorable (and with more obvious pronunciation)? I will ponder thereupon in my rare idle moments.
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    How about something like TIMER - Towards Intelligent/Innovative ME Research?

    Still pondering...
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    @MeSci That is really good, too!
     
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  16. DanME

    DanME Senior Member

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    I like TIMER, but it doesn't include the patients. But it is catchy. :)
     
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Thanks. Maybe it could stand for something like 'Transformation in ME Research.' Still pondering...
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    I just looked on Google and there is already something called the "Patient's Choice Award." Maybe we could expand on this idea because I think it could be very meaningful to the doctor receiving it. We could have separate categories for research, clinical care, etc. I think the word "patient" needs to be somewhere in the title of the award.
     
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  19. DanME

    DanME Senior Member

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    Maybe we could start a small group, which creates an award (maybe one for research, one for clinical care, one for advocacy) and advances the "thank you letter" idea. Anyone interested in joining?
     
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I'm hesitant about joining any new groups - belong to too many already! Or do you mean starting a group in Phoenix Rising? I think it could end up being very large! But that would mean spreading any workload more thinly, so would be good.

    Thought of another acronym - PAMMER - Patients' Award of Merit for ME Research.

    I think it needs to have an obvious pronunciation for maximum publicity, e.g. word-of-mouth, TV, radio, YouTube. That's my main problem with IPAMER - I don't know how to pronounce it, and different people would say it differently, and would struggle with it, and it would get confusing.
     

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