News from PrecisionLife Ltd.

This is a long (over 1h) interview and I was a bit put off by Cort’s style to start but it’s actually one of the more interesting interviews I’ve heard from PrecisionLife. Which makes me hopeful for how they present and communicate any findings in their upcoming paper

Points that stood out to me
  • why did PrecisionLife get involved with ME/CFS? Partly because nobody else was, so unlike their partnerships with other companies which remain more secretive, they could use us to show off their platform by publishing results and papers
  • why combinatorial genetics? Biology is complex, many diseases are complex and involve multiple factors, multiple genes, pathways and feedback loops which interact. Broadly speaking looking at combinations helps increase any biological signal in the data
  • they’re targeting small molecule generics, because they’re well known, well tolerated, easily obtainable, cheap and dosing is understood. So this helps fast track things compared to looking for new/novel
  • TLR4 and LDN, even if it only works on some patients, on a subset, if you can demonstrate to drug companies that you have a target (a gene) which is disease modifying and you have clinical validation that modulating this target in a certain has a clinical benefit and you’re demonstrating you can pick the patients it works on… that will get the industry interested in the market and the disease
  • positive words about the community of patients and researchers but also raises the need for scale, not just one or two people trying things
  • trials for 9 generics are designed, challenge is running them, they need partners as they are a small company and are looking at about 60 different diseases (across women’s health, obesity, neuroscience)
I’ll update with the second half later
 
I’ve skipped some of the discussion to focus on the bit people probably care about most, DecodeME data.
  • they have the data from 11,500 patients (smaller than full set as not everyone consented and there were some data QC issues)
  • They have 4 main datasets, UKB, UK Sano Gold LC, NIH All Of Us and now DecodeME
  • have previously replicated Sano Gold LC findings in All of Us, despite ancestry differences
  • now replicated their previous UKB findings in DecodeME data so confident in their methods and results
  • new preprint with results of their analysis of DecodeME data is coming in about 3 weeks (unsure when the interview was conducted)
  • PrecisionLife are seeing the same as DecodeME saw and more
  • 3 figure number of genes (so over 100) identified in DecodeME data
 
hotblack said:
I’ve skipped some of the discussion to focus on the bit people probably care about most, DecodeME data.
  • they have the data from 11,500 patients (smaller than full set as not everyone consented and there were some data QC issues)
  • They have 4 main datasets, UKB, UK Sano Gold LC, NIH All Of Us and now DecodeME
  • have previously replicated Sano Gold LC findings in All of Us, despite ancestry differences
  • now replicated their previous UKB findings in DecodeME data so confident in their methods and results
  • new preprint with results of their analysis of DecodeME data is coming in about 3 weeks (unsure when the interview was conducted)
  • PrecisionLife are seeing the same as DecodeME saw and more
  • 3 figure number of genes (so over 100) identified in DecodeME data
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See I'm more excited about what other people can do with this new paper than what precisionlife themselves are planning. Although that could pay off big time if thats how pharma get interested.

But really I want to see how these data complement DecodeME and Zhang and what the smart people here and in the research community make of it.
 
I'm also a bit skeptical about the claims of hetrogeniaty - I'm not saying there is only one illness under ME/CFS, there may well be more, but the whole 'there's 15 different subsets and all the treatments the community use actually work but only in subsets' thing always makes me a bit iffy.
 
In some ways I’m similar and I think we’d all like to find a single root cause and something which can just fix us all. Maybe we will, maybe it will be quick and something off the shelf works. But maybe it will be a new target requiring new treatments to be developed. So if we can find things which can help people until we get that, or it helps us understand more, it seems worthwhile.

To expand on this (or repeat myself) a bit, I’m looking at this more as a parallel effort than an alternative. Less about the arguments between there being multiple different diseases or one and more about different downstream variations of an underlying cause. We talk about these variations in biology and about the interactions of different systems all the time here. Even with daratumumab there’s the ‘oh well it works with people with certain NK cell populations’ argument.

So for me the idea that people’s variation in symptoms can be because some of the many different spinning cogs in the complex biological clockwork could be moving faster or slower than others seems logical. If we find one trigger that allows everything else to fall in to place, fantastic. But I’m not against looking at some of those individual cogs to help people feel better or to help us work back from there to understand mechanisms better either.

And yes the possibilities for getting drug companies and bringing funding and interest in to our condition seems interesting too.

My problem has always been I don’t understand what PrecisionLife are doing, they can’t explain it adequately to us. It’s a bit of a black box. Maybe that won’t change but they seem to have some decent relationships with people I do trust so we will see.
 
hotblack said:
To expand on this (or repeat myself) a bit, I’m looking at this more as a parallel effort than an alternative. Less about the arguments between there being multiple different diseases or one and more about different downstream variations of an underlying cause. We talk about these variations in biology and about the interactions of different systems all the time here. Even with daratumumab there’s the ‘oh well it works with people with certain NK cell populations’ argument.

So for me the idea that people’s variation in symptoms can be because some of the many different spinning cogs in the complex biological clockwork could be moving faster or slower than others seems logical
Click to expand...
I was thinking along these lines earlier before you posted this! Great minds!

The daratumumab example is good because it could be many different things - 2 different diseases, sub optimal drug effectiveness linked to NK cell levels, nk cell levels as a marker for something else etc.

My main beef with LDN is it often isn't clear how much its helping at all. My partner just went off it for five days due to prescription issues and felt worse. Is it because the drug was helping or because of withdrawals? Who knows. She has seemed a bit better on it generally. But identifying who will benefit (if anyone) could be really helpful. Id be much more inclined to try it, or mestinon or whatever if i had confidence i was likely to respond well.




hotblack said:
My problem has always been I don’t understand what PrecisionLife are doing, they can’t explain it adequately to us. It’s a bit of a black box. Maybe that won’t change but they seem to have some decent relationships with people I do trust so we will see.
Click to expand...
This is true. I wonder if, for example, Chris Ponting has been given a peek under the hood of their eldrich AI apparatus? Or whether it's a strict company secret like whats in coca cola (I don't think I want to know that one!)

If Chris or someone equally smart knows what they're up to and thinks the methodology is sound thats all I would need to know to feel confident. But industry secrets being what they are maybe their research partners don't even know under NDA or whatever.
 
LOCOME feedback webinar

Action For ME posted this invitation today. Webinar on Monday November 24th at 3pm.
Guessing this will follow the preprint publication.


Text from website

The LOCOME Project, a collaboration between PrecisionLife, Action for ME, and the University of Edinburgh, is nearing completion at the end of November.

LOCOME aims to improve understanding of the biological mechanisms that underpin Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long Covid. The project has used large-scale data analysis to explore genetic patterns that could help identify similarities and differences between the two conditions.

A webinar will be held on Monday 24 November at 3pm (UK time) to share the project’s final findings and discuss next steps. The session will include presentations and discussion from:

  • Dr Steve Gardner, CEO, PrecisionLife [link to PL website]
  • Krystyna Taylor, VP, Portfolio Strategy, PrecisionLife
  • Helen Baxter, patient advocate, Action for ME and 25% ME Group
  • Daphne Lamirel, Senior Research Manager, Action for ME
  • Sonya Chowdhury, Chief Executive, Action for ME
The panel will outline key results from the LOCOME study, including insights into potential biological pathways, future research priorities, and lived experience perspectives.
 
enrolled in the MELO study last year, received this notice today. looking forward to receiving the results.
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Dear Participant,
Thank you for participating in the MELO clinical research study focused on ME/CFS and Long COVID. Your contribution is helping to advance urgently needed science in an area that has long lacked answers.
This week, those who returned their sample collection kits as part of this study, will receive something rare in biomedical research: a return of results. Your individual research report will appear in your Chronicle Connect account in the coming days. You'll be able to find it from the home page once available
In most studies, participants never see the data they contribute. While this report is not meant to be used for clinical care, we believe sharing what we've discovered with you is both a sign of respect and a step forward in patient-centered science.
Below you’ll find information about your report, what these results could mean for future research and diagnostics, and an invitation to submit questions to be answered in a webinar during which our team will discuss the findings of this study. If you didn’t mail back your sample, while you won’t receive a research report, we welcome you to participate in the webinar and read on to learn more about the MELO Study.

What’s ahead​

  • About the MELO Research Report
  • What These Results Mean for Science
  • About the Organizations Involved
  • Our Recruitment Partners
  • Submit Your Questions
  • Educational Blogs from Our Partners
  • Your Data Protected
  • Thank You


About the MELO research report​

Your individual research results summary has been prepared in collaboration with PrecisionLife. The MELO Study has been funded by the Complex Disorders Alliance, a 501c(3) research organization. The study aims to identify potential biomarkers that may help explain the biological underpinnings of ME/CFS and Long COVID.
A research report is a summary of what was found in your sample as part of a scientific study. It will reflect findings identified through a research-grade algorithm developed to identify biomarkers associated with the clinical features of ME/CFS and Long COVID. These biomarkers have been associated with these syndromes in previous scientific studies. They can be used to identify factors that increase your risk and narrow down potential causes of particular symptoms.
These findings are not yet validated for diagnosis or treatment, but they provide a window into areas of biology that warrant deeper investigation. While this information may offer insights into possible biological patterns, all data is currently intended for research only. This means that none of the identified biomarkers are clinically validated and they aren’t intended for clinical management purposes.
By choosing to return these early research findings to participants, we hope to empower you to better understand the scope of what’s being studied, even if we’re still at the beginning.


What the results mean for science​

The insights collected in the MELO study represent a meaningful step forward in identifying biological signatures that could lead to future diagnostic tools, treatment pathways, or patient stratification strategies.
This study is part of a larger scientific puzzle. Your data, and the data of others like you, is helping researchers map potential subtypes and shared pathways across complex chronic illnesses. Over time, these insights could enable the development of more targeted studies, improved diagnostics, new treatments, and a better understanding of why these conditions affect people so differently.
Next steps could include:
  • Validation studies to confirm these findings in larger cohorts
  • Further analysis to explore how biomarkers correlate with symptom patterns
  • Collaboration with clinical and research partners to design diagnostic tools based on emerging insights
We know how deeply personal this is as many of you have waited years for meaningful answers. While this report is not a diagnosis, it may represent a piece of the puzzle that helps build toward one.
Your participation in this research is part of a growing shift toward better understanding, better diagnostics, and ultimately, better care. We're hopeful that this transparency can bring a sense of agency, even as the work continues.


About the organizations involved​

ChronicleBio: A biotech company focused on neuroimmune disorders like ME/CFS, Long COVID, and POTS. ChronicleBio combines patient-contributed data with advanced AI to uncover the biological drivers of complex chronic conditions and accelerate research that leads to answers, diagnostics, and future treatments.
PrecisionLife: A precision medicine company focused on complex chronic conditions. PrecisionLife is committed to improving health and preventing disease by creating more personalized diagnostic tools and treatment options for people with unmet medical needs.
Complex Disorders Alliance: A patient-founded, patient-focused nonprofit committed to accelerating research into complex chronic disorders that affect multiple body systems. CODA’s mission is to connect the dots to uncover shared disease mechanisms and fast‑track breakthroughs in diagnostics and treatments.


Our recruitment partners​

9ea47e89-f3a0-42bb-8776-0013103a3f33.png
​


Submit your questions​

We will be hosting a webinar to share our broader findings, answer your questions, and hear from our scientific team.

You can submit questions ahead of time by emailing research@chroniclebio.com. We will get to as many as we can. Please submit your questions by Monday, December 1.
Because this is a research study, all questions must be submitted in advance to ensure our discussion stays within the scope of the study as approved by the Institutional Review Board (IRB). We’ll email you a link to watch the pre-recorded webinar in a few weeks.

Blog from our partners​

To further your understanding of the MELO Study and the research process, our partners at PrecisionLife have put together an educational blog.
Read Here: Why Your Biology Matters: Progress Towards Personalized Care for Long COVID and ME/CFS

Your data, protected​

Your personal data was handled with care. We seek only platforms and partnerships that meet the highest standards of privacy and security. Chronicle Connect is hosted by CareEvolution and meets every regulatory measure and exceeds standard security protocols. PrecisionLife is accredited by the International Organization for Standardization (ISO), reflecting a commitment to best practices in data protection and privacy:
  • ISO 27001 – international standard for information security management
  • ISO 27701 – framework for managing data privacy
Your information will never be used outside of the scope outlined in your signed consent form. You can always access and review your ICF in Chronicle Connect.
All publications and public presentations resulting from this clinical research study will include deidentified data and no personal health information (PHI) to ensure participant privacy. All measures have been put in place to ensure that PHI is protected internally at the clinical site and no PHI has been shared externally with research collaborators​
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Posting the unformatted text (with linebreaks added) from the above post here for those who use dark mode to view the forums (the html formatting means it ends up as black text on a black background)

Dear Participant,

Thank you for participating in the MELO clinical research study focused on ME/CFS and Long COVID. Your contribution is helping to advance urgently needed science in an area that has long lacked answers.

This week, those who returned their sample collection kits as part of this study, will receive something rare in biomedical research: a return of results. Your individual research report will appear in your Chronicle Connect account in the coming days. You'll be able to find it from the home page once available

In most studies, participants never see the data they contribute. While this report is not meant to be used for clinical care, we believe sharing what we've discovered with you is both a sign of respect and a step forward in patient-centered science.

Below you’ll find information about your report, what these results could mean for future research and diagnostics, and an invitation to submit questions to be answered in a webinar during which our team will discuss the findings of this study. If you didn’t mail back your sample, while you won’t receive a research report, we welcome you to participate in the webinar and read on to learn more about the MELO Study.


About the MELO research report

Your individual research results summary has been prepared in collaboration with PrecisionLife. The MELO Study has been funded by the Complex Disorders Alliance, a 501c(3) research organization. The study aims to identify potential biomarkers that may help explain the biological underpinnings of ME/CFS and Long COVID.

A research report is a summary of what was found in your sample as part of a scientific study. It will reflect findings identified through a research-grade algorithm developed to identify biomarkers associated with the clinical features of ME/CFS and Long COVID. These biomarkers have been associated with these syndromes in previous scientific studies. They can be used to identify factors that increase your risk and narrow down potential causes of particular symptoms.

These findings are not yet validated for diagnosis or treatment, but they provide a window into areas of biology that warrant deeper investigation. While this information may offer insights into possible biological patterns, all data is currently intended for research only. This means that none of the identified biomarkers are clinically validated and they aren’t intended for clinical management purposes.

By choosing to return these early research findings to participants, we hope to empower you to better understand the scope of what’s being studied, even if we’re still at the beginning.


What the results mean for science

The insights collected in the MELO study represent a meaningful step forward in identifying biological signatures that could lead to future diagnostic tools, treatment pathways, or patient stratification strategies.

This study is part of a larger scientific puzzle. Your data, and the data of others like you, is helping researchers map potential subtypes and shared pathways across complex chronic illnesses. Over time, these insights could enable the development of more targeted studies, improved diagnostics, new treatments, and a better understanding of why these conditions affect people so differently.

Next steps could include:
  • Validation studies to confirm these findings in larger cohorts
  • Further analysis to explore how biomarkers correlate with symptom patterns
  • Collaboration with clinical and research partners to design diagnostic tools based on emerging insights

We know how deeply personal this is as many of you have waited years for meaningful answers. While this report is not a diagnosis, it may represent a piece of the puzzle that helps build toward one.

Your participation in this research is part of a growing shift toward better understanding, better diagnostics, and ultimately, better care. We're hopeful that this transparency can bring a sense of agency, even as the work continues.


About the organizations involved

ChronicleBio: A biotech company focused on neuroimmune disorders like ME/CFS, Long COVID, and POTS. ChronicleBio combines patient-contributed data with advanced AI to uncover the biological drivers of complex chronic conditions and accelerate research that leads to answers, diagnostics, and future treatments.

PrecisionLife: A precision medicine company focused on complex chronic conditions. PrecisionLife is committed to improving health and preventing disease by creating more personalized diagnostic tools and treatment options for people with unmet medical needs.

Complex Disorders Alliance: A patient-founded, patient-focused nonprofit committed to accelerating research into complex chronic disorders that affect multiple body systems. CODA’s mission is to connect the dots to uncover shared disease mechanisms and fast‑track breakthroughs in diagnostics and treatments.
 
I have mixed feelings about studies doing this.

On the one hand it’s the sort of information I would of course love to have and am very interested in.

On the other, it’s as yet unknown if this information is accurate let alone useful, these studies are part of a process to determine this. And even if accurate it’s like other specialist tests (genetic and beyond) interpretation and understanding requires specialist knowledge. Unless people getting this data are also getting ongoing specialist support it seems somewhat questionable. Although I understand there are very different views on this and s9mewhat different practices in the US.
 
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