PHASE 1 LAUNCH! New study reveals yawning gap in medical care for energy-impaired

#pwME #NEISvoid #FBLC #LongCovidWork #LongCovidCosts #TreatLongCovid #CountLongCovid #miilionsmissing #HealthEquity #patientled #medtwitter #wellless

A THREAD > Image shows 'energy' used for patient activities on a graph
Long-Covid visual report quantifies money, time, work and energy spent on the battle to get medical care, and introduces new language of the “well-less” to improve patient awareness and support.
@long_covid @longcovidwork @actionforme @chronicinclude #EDS #PoTS #postviral Image shows a new healthcare spectrum from Well[ness] throug
I tracked and analysed my own health interactions from 2020 across nine different self-data sources, including @BupaUK @Bupa , @LloydsBank , @timspector (Zoe Covid Symptom Tracking App(, email, SMS, mobile and calendar data #Datavisualization #selfanalytics #dataviz
1. 84% of items of my health were self-funded, totalling £3.1k self-funded and £2.5k on private healthcare.
#MONEY #Finance #LongCovidCosts
1.1 Monthly health spend (£) and monthy symptoms recorded in 2020 (self-data sourced from: @LloydsBank @timspector (Zoe Covid Symptom Tracking App) and @BupaUK Image shows a line graph. Y axis = total spend per month, X
1.2 Healthcare spend in 2020 (£) split by funding source and transaction categories/ therapy areas. (self-data sourced from: @LloydsBank @BupaUK #thisiswellless #wellless Image shows an Alluvial graph with each line representing a
2. I managed up to 30+ symptoms a day, ranging from those affecting her throat, stomach and head to chronic insomnia, chronic fatigue and depression.
#TIME #symptoms #COVID19
2.1 Symptoms recorded by area of the body/ system. experienced post-viral chest infection in feb 20 (#COVID19) (self-data source: @timspector Covid Zoe Symptoms Tracking App) #thisiswellless #wellless Image shows a calendar by month from April - Dec 20. Each da
2.2. Healthcare interactions per therapy area against the relative number of symptoms recorded each month during 2020 #pwME #LongCovidCosts (self-data source: @timspector Covid Zoe Symptoms Tracking App, email, SMS, mobile, calendar, @NHSuk patient access) #pwME #medtwitter Image shows a nightingale rose graph with each triange repre
3. My own healthcare team consisted of 35 different healthcare practitioners (including medical secretaries, labs and clinics) across seven different therapy areas.
#Work #patientled #healthcare #medtwitter #LongCovidWork
3.1 Total inbound and outbound healthcare patient interactions in 2020 (self-data sources: email, SMS, mobile, calendar, @NHSuk patient access) #work #LongCovidWork #healthcare #patientled #medtwitter Image shows an arch graph with total outbound patient intera
3.2 Types of healthcare interactions and duration of each item of work, by Therapy Area (self-data sources: email, SMS, mobile, calendar, @NHSuk patient access) #work #LongCovidWork #healthcare #patientled #medtwitter Image shows a series of radial graphs, each colour represent
3. In 2020, I made 56 phone calls to my GP surgery - and spoke to every GP in my surgery at least once (10 different GPs, a nurse and reception). I also worked through 83 emails with the personal assistant of my Infectious Diseases Consultant. #work #LongCovidWork #healthcare
4. I lost the equivalent of 600 working hours of a ‘healthy person’ to managing existing and investigating new symptoms (a third of a working year) #energy #energyimpaired #ELCI #LongCovidWork #health
Methodology (1)
- 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 Chronic Illness* in 2020 (assumption: x2 impact on energy)
Methodology (2)
- 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 (3)
- 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.
Hypothesis is based on various productivity analysis of email-based work in the workplace.
Methodology (4)
- Inbound email/ SMS = 5/1 mins
- Outbound email/ SMS = 2/ 10 mins
4. Total energy spent on healthcare in 2020 (+ actual time of energy required + impact of loss of patient recovery time). (self-data sources: email, SMS, mobile, calendar, @NHSuk patient access) #energy #patient #LongCovidWork #ELCI #energyimpaired #PEM #pwME Image shows a violine plot graph. Each plot represents the l
4. For those that are energy impaired, each task can take on average double the amount of energy required compared to a ‘healthy person’ due to:
1) Energy limitation - a feeling of never being fully charged and often functioning way below a normal rate of a ‘healthy person’. ..
2) Payback or post-exertional malaise (the hallmark symptom of ME/CFS) - meaning any over-exertion during critical periods (e.g. post-viral onset) results in a mounting energy debt and aggravation of symptoms that patients suffer for later.

Ref: @chronicinclude #ELCI
Thanks to all the patient led communities and charities out there doing the work to help patients be seen and heard @longcovidwork @chronicinclude @actionforme
In solidarity with all people across the globe living and working with 'medically unexplained symptoms'. Special thanks for your input to the project @PhillippaHolla1 @exceedhergrasp1 @maosbot @doctorasadkhan @Occ4LifeLtd @ClareRayner6 @lesleymacniven
Phase two of the project will begin next year, exploring the feasibility of developing it into a wider patient resource and tool to help others quantify and validate their patient work.

Let me know how you think this could work! 🧐😍🙏
#pwME #longhaulers #ELCI #data
Ah i missed you on this @JCeoltaSmith !

• • •

Missing some Tweet in this thread? You can try to force a refresh

Keep Current with Cat Fraser

Cat Fraser Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!


Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!


0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy


3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us on Twitter!