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Post-Viral chronic disease is like a bomb that goes off throughout the body...you can't see it. But it shatters and restricts the body of oxygen. The lifeblood of humans.


For many, it leaves them with an Energy Limited Condition (ELC).

 

This is Well[less] is a creative self-data and annual health report, made up of a series of data visualisations to bring to life one person's lived patient experience in 2020, that others are unable to see. Namely, the amount of money, time, work and energy that is lost by having to work on a second job - managing existing and investigating new symptoms of a chronic illness (ME/CFS + Long Covid).

**Visualisations are best viewed on a desktop/ tablet** 

 
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1. MONEY

What was the financial cost?

  • £3.1K self-funded and £2.5K private healthcare to manage and investigate new symptoms in 2020

  • 84% of total items were self-funded, including off-plan private healthcare, and all holistic therapy (e.g. reflexology, massage, ayurveda consultation)

  • Advanced nutrition, including energy supplements, probiotics and specialist gut support accounted for almost £2K spend

  • On average in April, 22 symptoms per day was recorded in the Zoe Covid Tracking app. By October, this had increased to 30

Data sources: Personal financial transactions 2020 , Bupa expenditure 2020, Zoe Covid Tracking App 2020

 
 
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2. TIME

How much time was lost?

  • Calendar starts in April (Q2), when the Zoe Covid tracking app became available

  • in Q2 some body areas/ systems were recorded: primarily throat, energy, stomach/ gut and head 

  • From May onwards there was a mobilisation of healthcare resources and communication, starting with GP and Infectious Diseases

  • By August (Q3) there was a significant increase in other symptoms, which was extended to all body areas -  often many symptoms recorded from each area each day

  • A low-grade temperature was mostly recorded in July, followed by an on-set of chronic insomnia, fatigue and depression 

  • The classic respiratory (Chest/ Lungs) Covid-19 symptoms were rarely recorded

  • There are no weeks where symptoms were not recorded between Apr - Dec 20

Data sources: Zoe Covid Tracking App 2020, Personal email (Gmail), mobile (Vodafone), SMS (iPhone), calendar (Google), NHS Patient Access (GP), activity app (Lifecycle)

*Communication and activities out of scope and not included: 

  • Any internet research into new symptoms, medical terminology, clinical trials - often hours during peak insomnia

  • Employer emails to support request and define logistics for covid-related tests (prior to Bupa defining their own policy on this emerging need)

  • Calls, emails, messages between employer/ manager to update on health and return to work

 
 
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3. WORK

How much work was involved?

  • 56 outbound phone calls to the GP surgery- call backs received 16 times along with 12 SMS messages

  • Appointments with x10 different GP Doctors, x1 Nurse and GP Reception - every GP in the surgery, at least once

  • Treated by 12 unique health specialists (3 non-medical) across 8 different Therapy Areas (TAs)

  • Required interactions with a total of 35 unique healthcare specialists - including labs, clinics and medical secretaries

The data tracks activity based on to/ from. Therefore: 

- Outbound hospital visits are listed as an outbound activity

- Calls received are listed as an inbound activity

(Both of the above examples would be a form of received care and may fall on the top or bottom of the arch).

Figures do not include the actual time spent being sick and managing symptoms. It is also exclusive of other non-paid work referenced in chapter 2.​

 
 
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4. ENERGY

What was the impact on recovery?

- 60 working hours (1.4 work weeks) spent managing existing and investigating new symptoms in 2020

- 120 working hours of energy required to do 60 hours of work as a person with an Energy Limited Condition* in 2020 (assumption: x2 impact on energy)

- 600 work hours of health recovery lost due to spending 120 hours of energy on managing existing and investigating new symptoms in 2020 (assumption: x5 impact on possible health recovery)

Methodology

Telephone calls, activity tracking and calendar visits all provide an exact duration of time for work time analysis. However emails and SMS communication do not. 


For the purposes of this report, the hypothesis is based on various productivity analysis of email-based work in the workplace. 

Inbound email/ SMS = 5/1 mins

Outbound email/ SMS = 2/ 10 mins

 
 

Energy Limited Condition (ELC)

*In the report 'I already have a job....getting through the day' (Hale et al, 2021), Energy Limited Condition (ELC) is broken down to the following unique features:

ENERGY LIMITATION - a feeling of never being fully charged and often functioning way below a normal rate of 'a healthy person.' For the purposes of this report, the assumption is that energy levels are on average 50% of someone without ELC. Therefore it takes twice as much energy to complete a single task.  However, in reality, this will depend on the nature of the task and for many, the actual % will be well below 50%. Forcing many into a sort of permanent lockdown from their beds, whilst those who can still work sacrifice having a life in order to be able to do so.

PAYBACK - refers to the likely aggravation of symptoms AND a reduction in overall energy available, following overexertion, which makes spending energy not just a physical challenge, but a mental one as well

FLUCTUATION - the variability of symptoms over days, weeks and months. In turn, this creates an unpredictability of energy capacity

 

THE MOST SEVERELY ENERGY IMPAIRED ARE FORCED TO SPEND ENERGY THAT THEY DON'T HAVE, TRYING TO GET HEALTH CARE & SUPPORT THAT STILL DOESN'T EXIST YET.

 

If you found this site useful and/ or insightful please consider showing your support by donating to the Open Medicine Foundation working on global bio-medical research to end ME/CFS (Myalgia Encephalomyelitis/ Chronic Fatigue Syndrome) + Long Covid.