Welcome to Lives Interrupted – a project by Health Rising designed to make clear on a personal level, the economic and other costs of having diseases like chronic fatigue syndrome (ME/CFS), fibromyalgia, postural orthostatic tachycardia syndrome (POTS), and long COVID.
The project was borne out of the recognition that ME/CFS and its sister diseases still get little respect. For decades, both ME/CFS and fibromyalgia have ranked, for instance, among the poorest funded diseases at the National Institutes of Health (NIH). Even the appearance of what appears to be millions of long COVID patients in the U.S. has failed to get the National Institutes of Health (NIH) to provide more support for ME/CFS
Hence the “Lives Interrupted” program’s attempt to clearly demonstrate how dramatically and often irrevocably the lives of formerly healthy, productive people from all walks of life have been impacted by these diseases.
The program contrasts your income, occupation, job responsibilities, functionality, etc. when you first became ill with the present date. It calculates, using an inflation index, a rough estimate of what we believe is probably a person’s minimum loss of income due to these diseases over time. Questions designed to illuminate other costs as well as the option to tell your story are also included.
Lives Interrupted is also the first part of our “Big Map” project and provides the opportunity to add your location and put yourself on the map. You can include your complete address or simply use the city you live in as your address. (You must add something). The project is currently open to people in the U.S. the U.K., Canada, Australia
You can use your real name or make up a name. The map also makes it possible for you to communicate with others on the map via a private messaging system included in our Forum package. We need your email address in order to knock out spammers and bots and if we need to get in touch with you, but all communications between you and the other members of the project will take place using this system; i.e. only Health Rising will have access to your email address. (You can turn off the private messaging system if you wish.)
Add Your Story
We hope you will be willing to add your particular story to the Lives Interrupted project. In order to do that you must register in the Health Rising Forums in order to use their private messaging service.
Registering in the Health Rising Forums
Go to this page and click on the Register tab on the right-hand side of the main menu bar. When you register you’ll get a confirmation email. Please respond to that and then
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- View the Lives Interrupted stories here
- Add Your Story here.
- Your account – you can find your account here
This is the first time we’re letting our baby out of the box and we’re sure changes are in store. We request that you provide your feedback on ways we can make this project more impactful.
Cort Johnson conceived this project and Stavya Grover created it on the web and greatly assisted with the calculations and all aspects of it. Thanks also to Art Mirin, Wired, and Lenny Jason for their suggestions.