Lives Interrupted

Cort

Founder of Health Rising and Phoenix Rising
Staff member
This is an early look at Health Rising's new "Lives Interrupted"program. We're hoping to get people to load their stories onto the program and test it out before.

This project came about because people just don't get it about chronic fatigue syndrome (ME/CFS). They hear the name and think "well I have that - I get fatigued" or that it's a minor problem. That mindset directly impacts the support this disease gets. In fact it could be argued that if we could really get across the fact that ME/CFS is a serious disease that serious funding would naturally follow.

[fright]
Whats-ur-story_new_ears.jpg
[/fright]We certainly have the facts. Research studies indicate ME/CFS is one of the most functionally impairing diseases there is. What we lack are the stories that healthy people can relate to; stories that indicate that people just like them - normal, well-functioning people - get this disease.

The Lives Interrupted project aims to change the mindset around ME/CFS by directly showing the impact it has on real peoples lives. It does this by contrasting what your or your ill friends, partners or relatives were doing before you/they got sick and what you/they are doing now.

It does this by
  • contrasting the jobs and responsibilities people with ME/CFS had prior to becoming ill and now;
  • using their income levels before they became ill to contrast what they would be making now (adjusted for inflation) if they had remained healthy, with what they are actually making now;
  • by contrasting their functional levels prior to illness and now;
  • giving everyone the opportunity to tell their story.
Some people may have concerns about listing their income or job history. If you do please use a pseudonym to tell your story.

(Please note that the project actually significantly underrates the economic costs of ME/CFS because it doesn't take into account increases in pay and responsibility over time. We believe it will still show very significant impacts from ME/CFS.)

Health Rising will be regularly highlighting patients stories on its Facebook and Twitter feeds and in the blogs and Forums. The next iteration of this project is planned to allow someone to click on a state or province and see total economic losses and years lost to this illness.

Unfortunately, fibromyalgia is not yet included in the Lives Interrupted project but we hope to add it. Editing capability is not present at this time either. At this point we have the capability to add stories for people in the U.S., Canada and the UK.

Special thanks to Hemispherx Biopharma for providing significant funding for this project.

Please check out the Lives Interrupted project and provide suggestions and comments using this email thread.

You can find the Lives Interrupted Stories here or directly go to the Tell Your Story page here.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
This sounds great... can't wait to see how it turns out!
I like it too!

Of course it only works if people actually participate in it. I sent it out to quite a few people and no one has actually left their story.

That makes me wonder if there's some reluctance to do that.
 

Lissa

Well-Known Member
I like it too!

Of course it only works if people actually participate in it. I sent it out to quite a few people and no one has actually left their story.

That makes me wonder if there's some reluctance to do that.
I intend to... but need to sift through stuff I've written to find a good synopsis of "my story". Easier to go off that than start from scratch all over again.

I also felt a bit confused with all the different $ calculations. I was thinking I'd come back to it when I have energy and maybe it'd make more sense then. :)

In the form --- does it do any of the calculations for you?! Or do I need to process all that out with a calculator in hand? Math is one of those things that my brain struggles with now.

Anyway- it's on my "to do" list. I would like to contribute!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I intend to... but need to sift through stuff I've written to find a good synopsis of "my story". Easier to go off that than start from scratch all over again.

I also felt a bit confused with all the different $ calculations. I was thinking I'd come back to it when I have energy and maybe it'd make more sense then. :)

In the form --- does it do any of the calculations for you?! Or do I need to process all that out with a calculator in hand? Math is one of those things that my brain struggles with now.

Anyway- it's on my "to do" list. I would like to contribute!
Thanks for pointing that out....we will make it clear the form does all the calculations...

I also wonder if we should keep the $ of years part-time and full-time worked....that would be for the second part of the program which I suspect we will not end up doing.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
We're still waiting for the first person to try this out! It would be really helpful (might save us some embarrassment!) is a couple of people do it before we send it out en masse.

we could work on making it editable...
 

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