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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Homebound – See ABC 's story here

My Journey and ME – See Don's story here

Entire Adulthood taken from me – See Megan's story here

My Labyrinthine Journey with a Covid Coda – See Rondo 's story here

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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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…

See Leslie Fellows‘s story and her most impactful loss

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,…

See Mary‘s story and her most impactful loss

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…

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Debilitated

Name: MD	Years Ill: 6
Location: Vancouver, Canada
Former Occupation: Family Physician
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: CA $1,542,301
Story: Got a severe nasopharyngeal MRSA infection from work in 2017 which went misdiagnosed and untreate…

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30 of 33 years gone

Name: Duckcove	Years Ill: 33
Location: North Kingstown, United States
Former Occupation: part time sailmaker, full time mom
Current Occupation: owner, part time custom marine canvas design
Former Activity Level (0-100): 100	Current Activity Level (0-100): 30

Story: At 5'2" I was a happy dynamo of energy. From healthy to bedridden with many haywire body sy…

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Patte’s Lyme Journey

Name: Patte Wood	Years Ill: 31
Location: Lexington, United States
Former Occupation: Administrative Director, Center for Computer Research in Music and Acoustics, Stanford University
Former Activity Level (0-100): 100	Current Activity Level (0-100): 60
Total Projected Economic Losses For Years Not Worked: $879,056

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Living life on a 2 inch bungee cord

Name: Diane	Years Ill: 32
Location: Waltham, United States
Former Occupation: Software Project Manager/Internationalization Specialist
Former Activity Level (0-100): 100	Current Activity Level (0-100): 20
Total Projected Economic Losses For Years Not Worked: $3,009,929