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.
| Name: Corey | Years Ill: 13 |
| Location: West Bend, United States | |
| Former Occupation: Electrical Engineer - Wireless Design | |
| Former Activity Level (0-100): 90 | Current Activity Level (0-100): 50 |
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Total Projected Economic Losses For Years Not Worked:
$893,187 |
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Story: I came down with the Swine Flu and never recovered. It set off an inflammatory cascade in my bod… |
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| Name: Ani | Years Ill: 15 |
| Location: Canberra, Australia | |
| Former Occupation: I.T. apprentice | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 30 |
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Total Projected Economic Losses For Years Not Worked:
A$967,481 |
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Story: I was in a car accident in 2008 at age 25. Prior to the accident I had a promising IT career an… |
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| 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 |
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Total Projected Economic Losses For Years Not Worked:
$382,347 |
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Story: I have lived a long unhealthy life so I’m going to condense into Timelines for travel, disease … |
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| 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 |
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Total Projected Economic Losses For Years Not Worked:
$3,660,079 |
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Story: Prior to my illness, I was a very active, very successful member of my community. I was seeing 3… |
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| 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 |
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Total Projected Economic Losses For Years Not Worked:
$161,978 |
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Story: I started getting sick 10 years ago. Before that I was an active and energetic person attending a… |
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| 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 |
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Total Projected Economic Losses For Years Not Worked:
£27,864 |
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Story: At the age of 6 I got shingles, then throughout my childhood I had repeated bouts of Tonsillitis,… |
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| 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 |
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Total Projected Economic Losses For Years Not Worked:
$305,609 |
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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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| 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 |
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Total Projected Economic Losses For Years Not Worked:
£155,054 |
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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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| Name: Steph | Years Ill: |
| Location: Indianapolis, United States | |
| Former Occupation: Respiratory Therapist | |
| Current Occupation: Respiratory Therapist | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 50 |
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Story: I had my daughter in 2010. My life changed immensely. I had this beautiful human to be responsibl… |
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| Name: Ann | Years Ill: 6 |
| Location: St. Louis, United States | |
| Former Occupation: Chemo and Infusion Nurse | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 40 |
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Total Projected Economic Losses For Years Not Worked:
$216,464 |
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Story: I became sick with ME 4 months prior to a 5-day backcountry hike of the Chilkoot Trail in Alaska.… |
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| Name: Anna Marie | Years Ill: 21 |
| Location: Huddersfield, England, UK | |
| Former Occupation: Architectural technician | |
| Current Occupation: Ventilation design engineer | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 70 |
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Total Projected Economic Losses For Years Not Worked:
£340,896 |
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Story: About 25 years ago (in my mid 20s), I started getting unexplained fatigue and then age 30 I got "… |
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| Name: Stéphanie | Years Ill: 8 |
| Location: Saskatoon, Canada | |
| Former Occupation: Assistant professor of physiotherapy | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 40 |
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Total Projected Economic Losses For Years Not Worked:
CA $465,720 |
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Story: My story is simple. My CFS/ME started after my best friend was murdered by her ex-boyfriend and I… |
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| Name: Ishtar | Years Ill: 12 |
| Location: Edinburgh, Scotland, UK | |
| Former Occupation: Psychologist & Dance artist | |
| Current Occupation: Psychologist in private practice, dance artist | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 50 |
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Total Projected Economic Losses For Years Not Worked:
£119,777 |
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Story: Prior to becoming ill, I had a rich and full life. I was part of a pain management team, I ran m… |
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| Name: Brie | Years Ill: 32 |
| Location: Bend, United States | |
| Former Occupation: Counselor | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 40 |
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Total Projected Economic Losses For Years Not Worked:
$2,051,715 |
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Story: I was a Nationally awarded swimmer, First chair musician, and worked hard in academics and my car… |
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| Name: LauraB | Years Ill: 6 |
| Location: Rock Stream, United States | |
| Former Occupation: RN | |
| Current Occupation: RN | |
| Former Activity Level (0-100): 90 | Current Activity Level (0-100): 40 |
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Story: On the way home from work, I saw a cat hit by a car on a busy roadway. I pulled over, ran out li… |
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| Name: Drew | Years Ill: 5 |
| Location: Los Angeles, United States | |
| Former Occupation: team director at early stage tech startup | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 40 |
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Total Projected Economic Losses For Years Not Worked:
$161,181 |
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Story: I was working to get some diagnosed digestive issues under control (SIBO- symptoms were nausea, c… |
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| Name: Dave | Years Ill: 25 |
| Location: Milan, United States | |
| Former Occupation: Teacher | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 20 |
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Total Projected Economic Losses For Years Not Worked:
$660,040 |
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Story: By the way, currently, I am 1/2 the man I used to be -- 260lbs when I got sick, and now down to 1… |
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| Name: Anna | Years Ill: 6 |
| Location: Saint Paul, United States | |
| Former Occupation: Physical Therapist Assistant | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 20 |
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Total Projected Economic Losses For Years Not Worked:
$122,116 |
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Story: I became ill right as I graduated from a Physical Therapy Assistant program (2017). I remember th… |
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| Name: Elizabeth | Years Ill: 3 |
| Location: Wolfville, Canada | |
| Former Occupation: Retired | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 30 |
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Story: In early March 2020 I became ill but for a while continued with winter hiking, thinking this was … |
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| Name: Amy S. | Years Ill: 3 |
| Location: Cortlandt Manor, United States | |
| Former Occupation: Chief Program Officer | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 20 |
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Total Projected Economic Losses For Years Not Worked:
$171,707 |
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Story: I became symptomatic with COVID-19 on March 25, 2020; it started with shortness of breath, and fo… |
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| Name: Suzie B | Years Ill: 4 |
| Location: Vancouver, Canada | |
| Former Occupation: Film Production/Location Management | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 20 |
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Story: I developed ME after my first chemotherapy, immunotherapy treatment and radiotherapy for stage 4 … |
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| Name: Mima | Years Ill: 7 |
| Location: Phoenix, United States | |
| Former Occupation: Law Enforcement Detective | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 20 |
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Total Projected Economic Losses For Years Not Worked:
$225,913 |
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Story: In 1998 I travel to Phoenix, Arizona, where I was provided a full doctoral scholarship to study m… |
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| Name: Cparks | Years Ill: 28 |
| Location: Los Angeles, United States | |
| Former Occupation: Science teacher | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 30 |
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Story: I believe my ME/CFS started with a 20 month active EB infection when I was 19-21yo. I recovered t… |
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| Name: Cort | Years Ill: 42 |
| Location: Henderson, United States | |
| Former Occupation: Student | |
| Current Occupation: Owner of Health Rising | |
| Former Activity Level (0-100): 100 | Current Activity Level (0-100): 50 |
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Total Projected Economic Losses For Years Not Worked:
$783,738 |
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Story: Long ago and pretty far away I was an athletic student running through the redwood forests on the… |
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Lives Interrupted Latest Story
Corey
West Bend, United States
Former occupation: Electrical Engineer – Wireless Design
$893,187
Lives Interrupted Sponsor
StudyME
Enroll in the OMF’s StudyME project and help bring about a cure for ME/CFS, fibromyalgia, POTS and long COVID.
