1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Healclick

Discussion in 'General ME/CFS News' started by beaverfury, Jan 16, 2014.

  1. beaverfury

    beaverfury beaverfury

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    West Australia
  2. beaker

    beaker CFS/ME 1986

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    Thanks for the info. I checked it out. signed up sort of. so much info to put in and so i left most of the details blank.
    It's frankly too overwhelming. Too many websites. too many forums. I need to limit myself. Maybe I'll go back some other time and slowly work up a profile. Right now too much.
    And Cort says he's going to start forums ?
    We are so fractured as a community. I wish there was more agreement and centralization so we could actually come together for advocacy.
    rosie26, Kati, Blue and 2 others like this.
  3. beaverfury

    beaverfury beaverfury

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    Yeah i know what you mean. Lately i've been spending days on the net clogging my brain up.
    Probably don't need to spend any more time looking up stuff that doesn't cure me.

    But i guess if Healclick proves itself useful to patient groups it will go from strength to strength.
    Might be another virtual world to escape into ? Cyber conversations with me/cfs folk are kind of reassuring.
  4. Marco

    Marco Old blackguard

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    I signed up although I may not spend much time there - it depends how it develops.

    I did though provide as much data as I felt might be useful to researchers who might want to 'data mine'. That would be a major benefit compared to other forums.
    rosie26, SOC and searcher like this.
  5. beaverfury

    beaverfury beaverfury

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    500 signups in 72 hours! Not bad.

    Of course... the site caters to many illnesses other than me/cfs.
    SickOfSickness likes this.
  6. mojoey

    mojoey Senior Member

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    Thanks for posting about HealClick beaverfury! I agree with the concerns about forums becoming fractured, and surely it was not our intention to dilute fabulous forums such as PR. This has always been one of my top 2 places to get information.

    But at the same time, I was diagnosed with chronic lyme, POTS, MCS, IBS, idiopathic sleep disorder...surely not an uncommon narrative on this forum. I had to jump around from one forum to another, and treatment reviews for a treatment were always specific to that disease. It was telling that "methylation protocol" really only became popular in the lyme disease community about one year after it spiked on PR. We're dealing with a lot of similar genetics here.

    So HealClick addresses this problem by personalizing content to your entire condition, and not just the dx you primarily identify with. I don't think we'll ever supplant the quality of information you can get from PR if you're just looking for posts on M.E., but if you're like myself and tired of forum-jumping for all your conditions, then I definitely think we can add a lot of value, especially as our patient-matching algorithm improves over time. Although it's exciting to get almost 550 members within 72 hours, our site is a really resource-intensive one (compared to forums) so it almost caused a server crash, despite us spending a lot of time on performance optimization prior to launch.
    Last edited by a moderator: Feb 20, 2014
    Wayne, leela and SOC like this.
  7. golden

    golden Senior Member

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    Clear Light
    I think its the year of the Green Horse!!!

    :) Excellent
  8. Ember

    Ember Senior Member

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    HealClick
    By Mindy Kitei
    Friday, January 17, 2014

    "Patient-driven Revolution" (excerpt):
    See also: HealClick: Patient Matcher
    Last edited: Jan 19, 2014
    mojoey likes this.
  9. mojoey

    mojoey Senior Member

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    A short video update on our campaign:
  10. Bob

    Bob

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    England, UK
    Wayne, rosie26 and SOC like this.
  11. mojoey

    mojoey Senior Member

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  12. mojoey

    mojoey Senior Member

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    I finally worked up the courage to tell my real story. This is what inspired me to start HealClick and why this project is so deeply important to me.

    Last edited: Jan 21, 2014
    justy, Nielk, Wayne and 4 others like this.
  13. Wayne

    Wayne Senior Member

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    Hey Joey, so good to see you posting here on PR. I don't get around too many forums, so have not been aware that your health has improved so significantly. Congratulations! :thumbsup: I think it's great that you're starting HealClick, and wish you the very best as you develop this. I've only got a sketch so far in my mind about what services you'll be providing (I suspect it'll evolve over time), but can already see that it will provide a much needed service/platform for the ME/CFS/Lyme, etc. communities.

    All the Best, Wayne
    Bob likes this.
  14. mojoey

    mojoey Senior Member

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    Hi Wayne, it's really good to hear from you. I wanted to add a more detailed reply...

    We use patient-matching to help patients share treatment experiences, but more importantly, we're trying to turn all these patient experiences into medical research for M.E., Lyme Disease, and other invisible illnesses typically ignored by the government.

    This is how it happens: Patients share information about their condition on this tracking system, and then we make all of this anonymous (so it can't be traced back to the person) before sharing it with researchers.
    Last edited by a moderator: Feb 20, 2014
  15. mojoey

    mojoey Senior Member

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    We just launched our Thunderclap campaign, which is a way to turn patients' voices into a thunderous public announcement about our patient-centered project. We have 6 days left to get 135 more participants!

    How it works:
    It sends out our message through all the participants' twitter/facebook/tumblr feeds at the same instant, flooding the internet. All you need to do is go to http://thndr.it/1iNeuLS and click the twitter, facebook, or tumblr button. That's it!

    Deeply grateful for your support,
    Joey

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