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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Re-post -- TAKE SURVEY -- What should the NIH study in ME/CFS? They're asking you!

Discussion in 'Action Alerts and Advocacy' started by JaimeS, Jun 18, 2016.

  1. JaimeS

    JaimeS Senior Member

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    Please forgive if this is 'old news' to you; @Sushi suggested I repost this here. Here is the original post.

    What should the NIH study in ME/CFS? They're asking you!

    We have created a survey that will be used to craft #MEAction's reply to the NIH RFI. Your voice and your opinion matter! Please complete the survey; it should take no more than 10-30 minutes.

    If brain fog stands in your way, you can leave the tab on your browser open and return to work on it later; the form will not 'expire'.

    Link here:
    http://bit.ly/NIH-RIF

    More information:

    Recently, the NIH put out an RFI -- a 'request for information' -- asking patients and patient advocates what kind of opportunities there are for studying ME, what technologies and tests might be utilized in the study of ME, and about the unique challenges ME/CFS research faces today.

    #MEAction has put together a survey that asks what YOU would like the NIH to study. While there are many pre-entered ideas, there is also a short-answer at the bottom of each section for you to fill in ideas of particular interest to you. The sections of the survey are as follows:
    • Potential treatments
    • Pathogenic Triggers
    • Non-pathogenic Triggers
    • Technology and Testing
    • Potential biomarkers
    • Research gaps, emerging needs, and opportunities
    • Challenges and barriers to ME research
    • Additional research questions (essentially our 'misc' category)
    • Demographic data
    If you don't feel you understand an item, feel free to look it up or skip over it; however, please do not rate something low because you are unfamiliar with it. This skews the data away from potentially useful but less well-known items.

    I wrote the descriptions of each item on the survey, and did my best to be as neutral as possible while still presenting the facts.

    We are looking to submit our answers by the deadline next Friday, and I will need some time to analyze the data we have gathered; so if you are interested in helping out, please fill out the form within the next several days. Remember, too, that you can submit your ideas as an individual, either 'as well' or 'only'. #MEAction is not your only portal to being heard by the NIH! However, by putting our voices together, I believe we will be heard all the louder.

    I am pretty darned certain they will ask us how many patient voices are represented in our survey. Please do take the time to fill this out, and remember -- if you suffer from brain fog, you can leave the tab open on your computer and just answer a few questions at a time over the next several days.

    The survey will take anywhere from 10 minutes to 30 minutes to complete.

    Here is a link to the Google form one more time:
    http://bit.ly/NIH-RIF

    You do not need a Google account to take the survey.

    THANK you as always for your participation -- your voice and your opinion matter.

    Jaime
     
    Ritto, justy, PhoenixDown and 15 others like this.
  2. NL93

    NL93 Senior Member

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    Will do
     
    Comet, Richard7 and JaimeS like this.
  3. msf

    msf Senior Member

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    Thanks for reposting, I´m glad you brought this to my attention.
     
    JaimeS and Comet like this.
  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks for the reminder.

    Perhaps add your deadline date to your headline to add urgency / immediacy?
     
    JaimeS, Groggy Doggy and Comet like this.
  5. Mary

    Mary Senior Member

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    @JaimeS - I just took the survey, very comprehensive, thank you so much!

    I only have one suggestion - where it asks the severity of your illness, I wasn't sure how to answer. I think I'm moderate; however, my life has still stopped; my activity is very limited, I crash regularly if I do more than 3-1/2 hours of light activity, but I can do more than many on this board. So I think it would be good to either clarify what the terms mild, moderate etc. mean exactly, or give a space where we could clarify the answer.

    To me severe means housebound; I'm not housebound or bedbound and can read, so in many ways am not too bad. But physically I'm very limited. I went grocery shopping this morning, a major feat, I hate doing it and that's it for the day and if I'm lucky I won't crash tomorrow but I won't know until tomorrow.

    Apart from that, great survey! :thumbsup: Everyone take it!
     
    JaimeS, Valentijn, Mel9 and 1 other person like this.
  6. Sasha

    Sasha Fine, thank you

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    Great job, @JaimeS! That must have been a ton of work, and you've made it loooooads easier for patients to tell the NIH what they think. :star::trophy::bow:
     
    MEMum, justy, JaimeS and 5 others like this.
  7. JaimeS

    JaimeS Senior Member

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    Thanks, everyone! Paige and I put together the rough draft, and then Jen added quite a lot -- they deserve credit too! :)

    Combing the data, now -- few silly errors making data topple over itself, like ppl typing in their onset was 20013 when (I hope!) they meant 2013. ;)

    Or perhaps they are from the future...!

    Few ppl submitted twice in a row accidentally, the usual stuff, but you've got to find it and weed it out by hand.

    I'm afraid of jinxing us, but wait until you hear about the level of participation. It's pretty mindblowing. And do keep it coming! 48 more hours....

    -J
     
    Sasha, slysaint, Mary and 7 others like this.
  8. justy

    justy Donate Advocate Demonstrate

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    I filled in the survey as I got an email alert from ME Action, which was lucky as I missed this on PR. Thanks for organising this - it was easy to fill out. Really hope the NIH listens to patients...

    Reposted in a FB group and got a few more responses.
     
    Sasha, JaimeS, Mary and 2 others like this.
  9. Keela Too

    Keela Too Sally Burch

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    I filled it in. Added a few comments too.

    Thanks for doing this - really - it has made it MUCH easier to participate. I had of course intended to do a letter, but with other things going on it was becoming increasingly unlikely to happen.

    :)
     
    justy, Sasha, JaimeS and 4 others like this.
  10. Ritto

    Ritto

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    Done
     
    justy, JaimeS, MEMum and 1 other person like this.
  11. JaimeS

    JaimeS Senior Member

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    You guys are awesome! Don't forget to tweet and FB it, if you do social media ... more people makes the data more robust. :)
     
    Comet and justy like this.
  12. JaimeS

    JaimeS Senior Member

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    Whew! Finishing at midnight tonight, poke at your friends who haven't filled it out yet!
     
    Comet and Sasha like this.
  13. JaimeS

    JaimeS Senior Member

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    Mary, Comet, mango and 1 other person like this.
  14. daisybell

    daisybell Senior Member

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    JaimeS and Comet like this.

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