Health Rising’s “Lives Interrupted” program is at a bit of a crossroads and could use your help. The program was almost, almost done until something – a good something – came up which suggested that the program could use some more eyes on it.

Research funders still don’t really get it about ME/CFS

Lives Interrupted is designed to make crystal clear the costs of having chronic fatigue syndrome (ME/CFS) (and hopefully fibromyalgia in a  later iteration).

Why? Because it’s clear, despite all the progress, that negative attitudes towards this disease are still rampant. We need look no further than the fact that even with the recent increase in funding chronic fatigue syndrome (ME/CFS) is still one of the poorest funded diseases at the NIH.

When a disease which has been shown to be significantly more functionally disabling than congestive heart failure, type II diabetes, multiple sclerosis, heart attack and depression gets funded like that you know that the politicians, bureaucrats, and researchers  – the people in charge of the purse – still haven’t “gotten it” about ME/CFS. If they had, it would get decent funding. (The functional disability study, by the way, was done in 1996)

When the head of NINDS, Dr. Koroshetz, in 2017 stated that he felt it took an “act of courage” for the head of the NIH, Francis Collins, to stand up publicly for ME/CFS and devote funding for it, you know we’re bucking some pretty strong headwinds.

The Lives Interrupted Program

The Lives Interrupted (LI) program was designed to make crystal clear the fact that “chronic fatigue syndrome” isn’t just about being tired. It’s about people losing their health, their careers and their incomes. The original program, which has not been released to the public yet, had people provide their income, occupation, job responsibilities at the time they first became ill and then now, past and present functionality, etc. (see below) and it invited them to share their story.

Using an inflation index, we then calculated each person’s minimum loss of income due to ME/CFS over time. From the few people who’ve done the program, we found that presenting income, job, and functionality changes due to the illness presented a pretty dramatic picture of a very challenging illness. The program showed that people who came down with this disease were basically normal, productive members of society before they got hit by a mysterious disease – a disease which ended up dramatically interrupting their lives.

I thought we were done until I gave a former project manager a look at it. Waiting has been disabled for over ten years but she flipped right into Project Manager mode and she had questions. First, she wanted to see the documentation. (Documentation?). What was the original intent of the program? (I mumbled something about advocacy….). Who was the program designed to affect and how was it designed to affect them? (Err……..ummmm……).

Waiting liked the program, but as a high-level project manager, she knew the costs of trying to add data later that might be helpful. Much better to get the data right in the beginning. She recommended that I send the program around for input – so here we are.

The basic question so far as I see it, is how best to capture the losses caused by this illness and how best to present those losses in a vivid way? So…what have you lost? What have you had to do that you wouldn’t otherwise have had to do? What adjustments have you and your family have had to make?

What could we tell Congress, the media or whomever that would cause them to really get the cost of ME/CFS?

The Basic Program

  • Income at time of Illness onset
  • Income now
  • Occupation at illness onset
  • Occupation now
  • Job Responsibilities at time of illness onset
  • Job Responsibilities now
  • Functionality then and now

Possible Additions 

  • I have had to move to a smaller dwelling – yes/no
  • I have had to cut into my savings/retirement accounts early – yes/no
  • I have had move back into my parents house – yes,no
  • I am reliant on outside family support – yes/no
  • I can no longer afford to do XXXX?
  • I lost a significant relationship – yes,no

Suggestions are welcome!

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