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    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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healclick.com

Plum

Senior Member
Messages
512
Location
UK
Hi

I found out about this website from a post on facebook. It seems like a really good idea. I guess the more people that join the more info we each have access to.

You sign up for free, make a profile, input your symptoms, successful treatments etc. I think the aim is meant to be that you can find other people with similar symptoms and possibly find some new treatment you hadn't considered.

I've only just started using it so don't know how good it's going to be.

http://www.healclick.com
 

mojoey

Senior Member
Messages
1,213
Thanks for sharing about us! I would also add that our ultimate goal is research. Patients with multiple conditions definitely need a better way to connect and share, but sharing alone isn't going to produce answers. We need more research.

This was my BHAG to use one project to tackle both goals.
 
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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi Mojoey - I have registered and been on once or twice, but I have to say I find the format difficult to understand and this has put me off going back. Admittedly i'm not young and never was technologically minded - I live currently in a place with no mobile signal so how modern phones work has passed me by entirely. Being housebound and never having had a proper 'job' I struggle with modern technology in general.

I am really only familiar with the traditional forum format and cant work out how HealClick works. I would like to, but it's hard to dedicate any more precious brain power to something I don't understand.

All the best with the project anyway,
Justy.
 

mojoey

Senior Member
Messages
1,213
I totally understand. The facebook stream-style format really isn't for everyone.

The treatment reviews should be a more familiar format to you (and others) than the feed. To see this, click "Treatments" at the top. You can filter reviews by condition and sort by highest rating, most reviews etc. It's already a fairly active page, but I'm really hoping to turn Reviews into the central part of our site.
 
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*GG*

senior member
Messages
6,389
Location
Concord, NH
Hi Mojoey - I have registered and been on once or twice, but I have to say I find the format difficult to understand and this has put me off going back. Admittedly i'm not young and never was technologically minded - I live currently in a place with no mobile signal so how modern phones work has passed me by entirely. Being housebound and never having had a proper 'job' I struggle with modern technology in general.

I am really only familiar with the traditional forum format and cant work out how HealClick works. I would like to, but it's hard to dedicate any more precious brain power to something I don't understand.

All the best with the project anyway,
Justy.

I'm not a spring chicken, but not an old curmudgeon, yet, but spend a lot of time online and am not phobic of technology, but I am aware of my time usage etc with technoology, if it's just going to take a lot of time, and not much benefit, good luck getting me to spend my precious energy "learning" something "new".

GG
 

Plum

Senior Member
Messages
512
Location
UK
I've been using the website a lot over the past few weeks and really like it. I think it may be a bit overwhelming for some when you first start using it BUT you can at least do your profile and then see if anyone matches you closely. So far I have only 1 good match and the more that join the more likely we all are of coming across some new treatment that might help us.
@mojoey I did have an idea which I wondered about for the site - would it be possible to have a list of symptoms to tick instead of typing them in? Then at the bottom you could add in any additional ones. I only say this because with so many different symptoms I think a lot of us forget some and this influences our matches. I keep adding to mine but I'm sure I've forgotten some!
 

mojoey

Senior Member
Messages
1,213
It would be good to know if it's the content feed that's overwhelming, or the fact that we ask for health data that's overwhelming. Two very different things, and the content feed is where users spend 90%+ of their time on our site.

I'm planning on adding a "skip this part" link so users don't need to enter any health data when they sign up.

P.S. @Plum: what you suggested is in the works!
 
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Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
It would be good to know if it's the content feed that's overwhelming, or the fact that we ask for health data that's overwhelming. Two very different things, and the content feed is where users spend 90%+ of their time on our site.

I'm planning on adding a "skip this part" link so users don't need to enter any health data when they sign up.

P.S. @Plum: what you suggested is in the works!

Hi Joey,

I have found that my attempts at "searching" for posts didn't come up with much. How are you finding that your search engine is working?

Best,
Sushi
 

mojoey

Senior Member
Messages
1,213
Hi Joey,

I have found that my attempts at "searching" for posts didn't come up with much. How are you finding that your search engine is working?

Best,
Sushi

Hi Sushi,

The search is working well on my end. What were you searching for, if you don't mind me asking?
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
Hi Sushi,

The search is working well on my end. What were you searching for, if you don't mind me asking?

Someone told me that they had read a post on Healclick recently on a certain subject. I was searching for that--I don't want to share the subject here though. You can contact me in chat or conversation though.

Sushi
 

Ruthie24

Senior Member
Messages
219
Location
New Mexico, USA
I like the idea of a checklist for symptoms because I notice that a lot of the same symptoms are entered with different phrasing so they aren't picked up as similarities, thus they aren't recognized as "matches" for people. As long as there is an option to add unique symptoms as well it seems like that would work.
 

mojoey

Senior Member
Messages
1,213
I like the idea of a checklist for symptoms because I notice that a lot of the same symptoms are entered with different phrasing so they aren't picked up as similarities, thus they aren't recognized as "matches" for people. As long as there is an option to add unique symptoms as well it seems like that would work.

We're working on this. Also working on an alternative forum view of the site for users that aren't used to the stream format. Thanks for the input!