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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · Jun 20

3/ How do we scale something that's so fundamentally broken at the source?

#10YearPlan #TransformNHS #HealthcareInnovation #PublicHealth #HealthPolicy

www.thetimes.com/article/72d9...

Simple blood test could provide first reliable diagnosis for ME

Discovery of signature patterns of molecules in the blood of ME patients may signify a turning point in diagnosis, typically made by ruling out other illnesses

www.thetimes.com

Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · Jun 20

2/ .. for multi-system, multi-organ diseases affecting millions of patients)

...while burning through £££ billions on treatments that don't work and creating massive workforce impact when we get this wrong...

Shouldn't we maybe fix the science first?

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · Jun 20

1/ What if: before we scale the technology and roll out an even faster way to provide even more:

🚩mis-diagnosis
🚩medical gaslighting
🚩harmful psychologisation
🚩wrong data and coding

(all systematically baked into existing tests, policies, processes and culture in the NHS…

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 20

This is exactly why we have started to build new models and frameworks at Lab of Lived Experience to protect our human biosystems and energy as a new-urgent, sustainability practice.

Here’s Violet Affleck telling the adults what they need to do!⚡️⚡️⚡️ yaleglobalhealthreview.com/2025/05/18/a...

A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles

BY VIOLET AFFLECK I spent the January fires in Los Angeles arguing with my mother in a hotel room. She was shell-shocked, astonished at the scale of destruction in the neighborhood where she raised…

yaleglobalhealthreview.com

Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 20

A daughter of two Hollywood actors continues to be the most gutsy, outspoken on the ongoing pandemic and the mass disability it’s causing, and is now connecting it all to our climate response….after her experience of the Palisades burning down.

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Reposted by Lab of Lived Experience (Lab OLE)

Cat Fraser @catsocialintel.bsky.social · May 15

Great to chat to @peterholbrook.bsky.social @socialenterpriseuk.bsky.social today on the ongoing pandemic impacts to SMEs and livelihoods, and an urgent need to mobilise social ent finance….

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 12

From: laboflivedexperience.substack.com/p/data-scien...

#Humanbiosustainability #millionsmissing #severeme #StillTheSaME

Data Science as Resistance: Community-Powered Health Equity

Part 3: Energy-Aware Design and Human BioSustainability

laboflivedexperience.substack.com

Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 12

We sombrely mark #MEAwarenessDay #WorldMEDay 2025 with an extract from our latest article:

WE ARE WORKING TO SAVE THE PLANET, WHILST LETTING HUMAN BIOSYSTEMS & ENERGY COLLAPSE AROUND US

Time for a new approach.

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 9

9/
@thecanaryuk.bsky.social
@thesicktimes.bsky.social

/ END

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 9

8/ Our final part of the Data Science for Resistance Series: Part 3 - Community-powered health equity, features work:
@catherinehale.bsky.social
@johnpring.bsky.social
@abrokenbattery.bsky.social
@catsocialintel.bsky.social
@longcovidadvoc.com
@nicolajeffery.bsky.social

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 9

7/Let’s help business make human biosystems protection society's #1 sustainability goal. 💥💥

Immediate next steps: a convening with impact investors, systems thinkers and business leaders to design our starting point.

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 9

6/ Our digital-first community-led lab-designed with and inspired by people with severe ME and Long Covid will be accessible to all.

Clean air standards, bio futures funding, energy-aware workplaces – we'll be co-creating it ALL this year-making it a strategic use of your limited time and energy.

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 9

5/ This is how we unlock powerful allies and £20Bn in private funding OUTSIDE the broken healthcare system.

We’ll be bringing in all the systems changemakers across the pyramid - from clean air advocates to social finance and biomed innovators to collab…

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 9

4/ Read how we got here: bit.ly/4jcm6uZ

Data Science as Resistance: Community-Powered Health Equity

Part 3: Energy-Aware Design and Human BioSustainability

bit.ly

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 9

3/ In the final part of our Data Science as Resistance series, after analysing and deconstructing our broken economic, social & health systems, the conclusion is clear:

We need to build a new system that we design and own with our unmet needs as the foundation.

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 9

2/ #HumanBioSystems: takes us from "disease & disability" to “human biosustainability”

A strategic repositioning that puts OUR energy and health crisis at the foundation of global business strategy and priorities, where it belongs.

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 9

1/ 🔥 When human energy becomes a measurable sustainability metric, everything changes! 🚀

Today we’re introducing the #HumanBiosystemsPyramid as a new strategic framework to mobilise business and finance 🚀

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · May 3

Correct URL: petition.parliament.uk/petitions/70...

Petition: Introduce new air quality and PPE rules for health and social care settings

We want the Government to set new rules on air quality and infection control in health and social care settings, to prevent and control airborne infections, with new ventilation and filtration require...

petition.parliament.uk

Reposted by Lab of Lived Experience (Lab OLE)

Cat Fraser @catsocialintel.bsky.social · May 2

This is a slide from my @laboflivedexp.bsky.social
investor deck I’m working on…

Does everyone know this??

Have you signed the petition to help protect us in UK healthcare?

petition.parliament.uk/petitions/7003… #CleanAirNowo#LongCovidi#Healtht#mede#disabilityt#Healthyh#longevityt#futurere

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · Apr 30

4/ ..We’re still just following this almost blindly at the moment..”
- END

Read the full analysis at: laboflivedexperience.substack.com/p/data-scien...

laboflivedexperience.substack.com

Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · Apr 30

3/ And In Dec 23, there was a Canadian research paper that looked at the population level of Long Covid and they discovered that after 3 infections (which could be known or unknown due to the asymptomatic features of this virus), that 38% have or have had Long Covid…

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · Apr 30

2/ …happening at least once every year now.
By Mar 24, Long Covid had doubled in children and this repeated infection model should worry every economist, business leader and policy maker

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · Apr 30

1/ “Our Immune Systems Were Definitely NOT Designed For Multiple Hits of an Airborne SARS Virus….

————-

Repeated infections model by
@davidsteadson.bsky.social

Canada study: www150.statcan.gc.ca/n1/pub/75-00...

Long Covid in Children: ONS, March 23

(Video clip recorded for @DS_x_HE Sep 24)

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Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · Apr 30

2/ …happening at least once every year now.
By Mar 24, Long Covid had doubled in children and this repeated infection model should worry every economist, business leader and policy maker.

Lab of Lived Experience (Lab OLE) @laboflivedexp.bsky.social · Apr 17

#futures #design #Creative #systemsthinking #innovation #SocialJustice #Healthequity #inclusivedesign #WithUs #NothingForUsWithoutUs #polycrisis #rebuild #peoplepower #Entrepreneurship #Entrepreneur #dataforgood #Longevity #esg #community #purpose

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