Lives Interrupted: the Hidden Costs of Having a Neglected Illness

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Lives Interrupted seeks to illuminate the economic and other costs of having diseases like chronic fatigue syndrome (ME/CFS), fibromyalgia, postural orthostatic tachycardia syndrome (POTS), post-treatment Lyme disease, and long COVID. These diseases affect millions, typically receive little research funding, and, as a consequence have few good treatments available. Find out more about Lives Interrupted here.

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Knocked Out Of The Job Of a Lifetime – See Bob Graybosch's story here

Structural Failure – See Allyn Archer's story here

Full recovery in 2020 – See Ani W's story here

My non-miraculous, extremely slow, non-recovered, successful life, so far – See JudyH's story here

My cost of living crisis – See Georgie Coghlan's story here

Beyond the Birdcage: Inconvenient Truths About Myalgic Encephalomyelitis – See Jennifer McBryde's story here

How Swine Flu Changed My Life Forever – See Corey's story here

A career just starting cut short. – See Ani's story here

Adverse Reaction to a Flu Vaccination – See Azalea's story here

Post vaccination – See Kitty's story here

Nursing Myself – See Alison Wiltbank's story here

Lost in Time – See Bryan's story here

Searching for answers/Learning acceptance – See Leslie Fellows's story here

M.E STOPPED MY LIFE – See Mary's story here

Everything is Gone – See Lavenderblue 's story here

A Broken Journey – See T-Rev 's story here

Debilitated – See MD's story here

30 of 33 years gone – See Duckcove's story here

Patte’s Lyme Journey – See Patte Wood's story here

Living life on a 2 inch bungee cord – See Diane's story here

I’m still standing! (ack to Elton John) – See Drdragonmama's story here

Still Fighting… – See Steph's story here

Post Covid evolved into Post Viral Syndrome and Fibromyalgia – See Henchman D's story here

Bowed but not broken – See Ann's story here

Wobbly legs and ME – See Anna Marie's story here

Not the life I expected – See Stéphanie's story here

Nobody is Listening – See Dea's story here

Some recovery and a lot of determination – See Ishtar's story here

This disease has taken 32 yrs. of my life – See Brie's story here

Never Better – See LauraB's story here

My adult life should have been just beginning. Instead it was forever stolen from me. – See Jo-Anne's story here

Career, family, fortune, friendships, reputation wrecked at 34y – See Remembrance's story here

Fibromyalgia For 2/3 of My Life – See Emily's story here

Losing a life of science. – See Christyne Bliton's story here

A full and promising life redefined by chronic illness – See Drew's story here

CFIDS & My Disability – See Dave's story here

Physical therapist assistant with Non-rehabable illness – See Anna's story here

Loooong Covid – See Elizabeth's story here

From caregiver to patient – See Lynn R's story here

Once on track to becoming CEO – See Amy S.'s story here

Cancer and ME – See Suzie B's story here

Lyme+ to ME – See Mima 's story here

A long slog – See Cparks's story here

Long ago in a distant place… – See Cort's story here

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Adverse Reaction to a Flu Vaccination

Name: Azalea	Years Ill: 14
Location: Pullman, United States
Former Occupation: IT-Project Manager
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: $1,113,843
Story: In the fall of 2009 my former employer strongly encouraged all their employees to have a flu vacc…

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Post vaccination

Name: Kitty	Years Ill: 2
Location: East Greenwich, United States
Former Occupation: Women’s Boutique/Therapist
Current Occupation: Business owner/therapist
Former Activity Level (0-100): 100	Current Activity Level (0-100): 70
Total Projected Economic Losses For Years Not Worked: $56,538
Story: So I went from taking kickboxing, and working to one day, noticing I could barely do a push-up. T…

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Nursing Myself

Name: Alison Wiltbank	Years Ill: 32
Location: Ocala, United States
Former Occupation: Part time RN
Former Activity Level (0-100): 100	Current Activity Level (0-100): 30
Total Projected Economic Losses For Years Not Worked: $382,347
Story: I have lived a long unhealthy life so I’m going to condense into Timelines for travel, disease …

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Lost in Time

Name: Bryan	Years Ill: 22
Location: Huntsville, United States
Former Occupation: Family Physician
Former Activity Level (0-100): 100	Current Activity Level (0-100): 50
Total Projected Economic Losses For Years Not Worked: $3,660,079
Story: Prior to my illness, I was a very active, very successful member of my community. I was seeing 3…

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Searching for answers/Learning acceptance

Name: Leslie Fellows	Years Ill: 9
Location: Santa Cruz, United States
Former Occupation: Winery owner/export director
Current Occupation: Very part-time desk work for our family winery
Former Activity Level (0-100): 100	Current Activity Level (0-100): 60
Total Projected Economic Losses For Years Not Worked: $161,978
Story: I started getting sick 10 years ago. Before that I was an active and energetic person attending a…

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M.E STOPPED MY LIFE

Name: Mary	Years Ill: 2
Location: Abingdon, England, UK
Former Occupation: Professional Dog Trainer
Former Activity Level (0-100): 80	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: £27,864
Story: At the age of 6 I got shingles, then throughout my childhood I had repeated bouts of Tonsillitis,…

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Everything is Gone

Name: Lavenderblue	Years Ill: 3
Location: Little Rock, United States
Former Occupation: Registered Nurse
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: $305,609
Story: At first I thought it was just taking a long time to recover. I took it easy for a bit. It never …

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A Broken Journey

Name: T-Rev	Years Ill: 8
Location: Bath, England, UK
Former Occupation: Christian Minister, Charities Director
Current Occupation: Christian Minister, Charity Director
Former Activity Level (0-100): 100	Current Activity Level (0-100): 40
Total Projected Economic Losses For Years Not Worked: £155,054
Story: I was living my best life, a high output, high energy, do-gooder. Able to travel and work in some…