Basic Stuff

  • Name: Drew
  • Country: United States
  • State: California
  • City: Los Angeles
  • Gender: Male
  • Age: 34
  • Education: Four Year Degree
  • Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
  • Diagnosis:
    • Chronic Fatigue Syndrome (ME/CFS)
    • Postural Orthostatic Tachcycardia Syndrome (POTS)
    • Irritable bowel syndrome
    • Small intestinal bowel overgrowth
    • Environmental Illness (EI)
    • Long COVID
    • small fiber neuropathy, CIDP (chronic inflammatory demyelinating polyneuropathy)
  • Year Illness Began: 2018

Functioning Interrupted

Former Level of Functionality: 100
(No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work full-time without difficulty.)
Current Level of Functionality: 40
(Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 50%-70% of expected. Not confined to house. Unable to perform strenuous duties; able to perform light duty or desk work 3-4 hours a day, but requires rest periods.)

Work Interrupted

  • Former Occupation: team director at early stage tech startup
  • Job Responsibilities at Former Occupation:

    I was an early hire at a software company in NYC. I was responsible for the success and adoption of the software. I ran a team across multiple time zones, servicing 100+ clients.

  • Years of Work Lost: 1
  • Current Work Status: Not working now (not on disability)

Income Interrupted

  • Yearly Income Before Becoming Ill:


  • Minimum Current Annual Income Loss:


  • Total Projected Economic Losses For Years Not Worked:


Other Interruptions

Certified Disabled: No

  • My parents or other family members have provided financial support
  • This illness has severely impacted my ability to financially prepare for retirement
  • I left my job or retired early
  • I had to move back into my parent’s house
  • I decided not to have children (or have more children)

Most Impactful Loss

The ability to thrive in the way I wanted to in my 30's is my biggest lost. I had a life plan, filled with hobbies and ambitions and travels, that is now on hold, perhaps permanently.

My Story

I was working to get some diagnosed digestive issues under control (SIBO- symptoms were nausea, constant burping, fatigue, bloating, etc). Was taking some antibiotics and supplements to manage symptoms. In May of 2019, I went out into the ocean to surf (I still had energy and fitness) and after an hour or two, paddling back out I was suddenly winded and experienced an episode of extreme heart rate variability and tachyardia. My heart rate rose, I became short of breath and winded and suddenly my arms were exhausted. I never recovered from that day. I now see it as sudden onset ME/CFS, an autoimmune storm at took me out. I was sick as a child with EBV and had struggles throughout my adult life with gaining weight and a weakened immune system, a likely precursor.
COVID in March of 2020 left me with more persistent and permanent POTS symptoms.

To this day, whenever I try to exert energy, I become winded and quickly exhausted, with fatigue sometimes lasting days. I can’t walk for more than 15-20 minutes without needing to sit down (that's the POTS and Dysautonomia at play, I certainly can’t run, I can’t go to the gym or push myself in any way that increases my HR— even the slightest amount of exertion, like carrying groceries, moving things into the basement, washing my hair — leaving my arms feeling limp and useless (I know this now to be PEM). I’ll notice as soon as my heart rate goes up, I become winded, my chest gets tight and fatigue spreads through my body and I crash. I was once an active individual - regularly surfing, working out, spending time in the gym, traveling - but all are no longer feasible. I’ve lost around 25 lbs. The GI symptoms I have been able to improve with diet and supplementation, however I still experience flares, which will make the fatigue and PEM worse.

I have tested both positive and negative for Lyme. I have also done treatments for Lyme, but have not seen any improvement when doing so.

I have been diagnosed with POTS, SIBO, post Lyme, dysautonomia, hesitant ME/CFS, moderate / severe autonomic dysfunction.

I have seen many prominent doctors and specialists in the field. I believe that healing is possible and am actively seeking and researching. for the "Aha" moment, but every day is a struggle.

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