• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Healclick

beaker

beaker

ME/cfs 1986
Messages
773
Location
USA
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.
 
beaverfury

beaverfury

beaverfury
Messages
503
Location
West Australia
beaker said:
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.
Click to expand...

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.
 
Marco

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
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.
 
mojoey

mojoey

Senior Member
Messages
1,213
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.
 
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Ember

Ember

Senior Member
Messages
2,115
HealClick
By Mindy Kitei
Friday, January 17, 2014

"Patient-driven Revolution" (excerpt):
Tuan’s goal is to create a patient-driven revolution of personalized health information and research data. “If we can get enough users and keep advancing our patient-matching algorithm, we can start correlating co-conditions, symptoms, treatments and labs for patients to discuss with their doctors,” Tuan says. “We hold a power in numbers that could be game-changing. If we can arm ourselves with a database that truly captures our health over time, we can then present ME and other diseases as diseases worth solving.”

HealClick has launched an Indigogo fundraising effort. If you’d like to contribute, click here: www.indiegogo.com/projects/revolutionizing-patient-sharing. To sign up for HealClick, click here.
Click to expand...
See also: HealClick: Patient Matcher
 
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Wayne

Wayne

Senior Member
Messages
4,306
Location
Ashland, Oregon
mojoey said:
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.
Click to expand...

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
 
mojoey

mojoey

Senior Member
Messages
1,213
Wayne said:
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
Click to expand...

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.
 
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mojoey

mojoey

Senior Member
Messages
1,213
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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