Lab of Lived Experience (Lab OLE)

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

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

#10YearPlan #TransformNHS #HealthcareInnovation #PublicHealth #HealthPolicy

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

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?

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…

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…

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 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.

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….

Data Science as Resistance: Community-Powered Health Equity Part 3: Energy-Aware Design and Human BioSustainability

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

#Humanbiosustainability #millionsmissing #severeme #StillTheSaME

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.

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

/ END

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

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.

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.

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…

Data Science as Resistance: Community-Powered Health Equity Part 3: Energy-Aware Design and Human BioSustainability

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

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.

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.

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 🚀

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...

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

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…

#CleanAirNow #LongCovid #Health #med #disability #Healthy #longevity #future

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

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

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…

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

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)

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.

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

Across The Future Of Health Landscape, Multiple Visions Are Taking Shape…

Lab OLE can be a bridge to connect us into the other ecosystems that are capturing attention + investment….

#redesignhealth

5/ and they all just keep adding, creating a bigger problem of mass inflammation in the body. Which makes it harder and harder to recover.” - END

4/ and yes that is happening, but on top of that we’re also getting system dysfunction and collapse in severe cases.

And so you’re not just getting one or two of these, MAJOR multi-organ, multi-system problems..,you’re getting a lot of them. Even all of them, All at once…

3/ The Duo are trying to take this very complex picture and build and accelerate treatment programmes and protocols around it…but this is really the key picture that everyone needs to understand:

In healthcare we talk about having multiple co-morbidities in a traditional sense

2/ 2/ “I just want to give a massive shoutout to David Putrino who is a kind of rockstar in our #LongCovid communities…he runs the Mount Sinai Rehabilitation Clinic and he’s just set up a Complex Infection Associated Associated Lab , with Amy Proal of Polybio….