Since falling ill with myalgic encephalomyelitis (ME) in 2018, it has frustrated me greatly seeing organizations and especially governments repeating out-of-date statistics related to this disease — minimizing either the apparent number of sufferers (such as the much-repeated 250,000 figure for the number of ME patients in the UK) or our degree of suffering. This knowledge gap has been compounded by the COVID-19 pandemic, which has been shown to significantly increase the number of ME cases.
And so I began making lists of ME studies and numbers — initially for my own personal reference, then to participate in better-informed discussions. After all, accurate statistics are vital for speaking the language of policymakers, and pressing our case as compellingly as possible.
My experience working in London at a specialist data science consultancy, and later at a data software startup called Count, prepared me to work flexibly as the data science lead for Visible, a wearable tech startup focused on helping people with ME and Long COVID. I was responsible for designing and implementing data-centric features within the app, as well as working with Visible’s academic partners on research studies.
As I became more involved with the patient community, it felt natural to try and make my online advocacy as ‘data-informed’ as possible.
But as my involvement grew, so too did my feeling that the advocacy and scientific community was missing something. The information I needed to know to be an effective advocate was scattered, shared in fleeting Twitter conversations, and hard to grasp on demand.
Although there was a general sense that ME and other infection-associated chronic conditions (IACCs) were massively underfunded, I wanted a much clearer picture of just how much exactly was going on, where, and by whom. I felt from the start that such a tool could be very powerful, not just for patient advocates such as myself, but also for researchers, politicians, entrepreneurs and philanthropists. Really anyone looking to make a dent in this problem.
This was the beginning of what we are now working to create at CrunchME: the open evidence and insight base to help tackle IACCs.
Working to inform science and advocacy
My early work of mapping IACC-focused research groups across the world showed me that the seeds of great research are sprouting up all over the place — the scientific interest is there. For example, there are IACC-focused biomedical research groups at seven of the world’s top 10 universities.
However, what is clearly lacking is the depth of resources available to these teams. That means how many scientists they can afford to employ, how well equipped they are, and the size and power of their studies.
To address this challenge, our core goals for CrunchME are now to:
1. Help IACCs attract significantly more funding and talent
As we patients know only too well, ME/CFS, Long COVID and other IACCs are incredibly resource-starved problems. Indeed, funding is the single biggest bottleneck to accelerating progress across these diseases. So CrunchME aims to provide evidence needed to motivate action from philanthropists, governments, and other potential funders of IACC research.
2. Improve connections within the ecosystem
We believe that improving the connections between different people working in the space will help to make the most of what resources we do have available. In particular, we see CrunchME as a tool encouraging and enabling collaboration between different players in the ecosystem. For example, we have recently seen Visible collaborate with Mount Sinai, and the University of Edinburgh and Action for ME work with the biotech startup PrecisionLife.
Collaborations like these show how established institutions can work in partnership with both patient-led organizations and nimble startups to tackle complex problems significantly faster than through traditional research alone. We hope CrunchME can accelerate this trend.
3. Help new entrants get up to speed faster
We want CrunchME to help people new to the field of IACCs orient themselves more quickly by providing a clear view of who is doing what and where. This could include a new lab understanding where to look for funding opportunities, what biobanks and samples are available from which locations, or what scientific conferences they should attend.
Building the database, looking to the future
Since launching in March 2024, we have steadily expanded the key components of CrunchME. The first component we started building was our open ecosystem database, which records activity across many different facets of the IACC ecosystem including research groups, clinical trials, and biomarker projects. It now includes 19 different databases, covering research, advocacy organizations, influential people, and economic estimates on IACCs.
Our team has also grown from just me to several volunteer contributors regularly adding to this database to help keep it fresh.
The second component we added was open data analysis: creating charts and analyses from publicly-available data sources to help illuminate the state of IACC research, and inform where we as a community should be pushing for attention. This started with pulling data from PubMed, a U.S. government resource that stores and indexes biomedical research papers.
For example, the figure below shows the cumulative number of papers over time mentioning different IACCs, compared to the better-known diseases of multiple sclerosis (MS) and HIV/AIDS. These two form useful reference points, since MS is a better-known but still under-funded condition, while HIV/AIDS has been very well-funded relative to its disease burden. This helps to make it clear just how far outside of the normal ‘window’ of research attention IACCs like ME, fibromyalgia and Long COVID currently fall.
Our visualizations and analysis code are freely available on our CrunchME site and on GitHub. Some of these charts have already made their way into other advocacy efforts, including #ThereForME’s launch report: ‘Building an NHS that is there for Long COVID and ME.’
The third and latest component of our work is writing our own advocacy reports and shorter articles, using our database and analysis. We released our first report, aimed at policymakers around the world, in January: ‘The Future is a Policy Choice: Addressing Infection-Associated Chronic Conditions.’
This work was led by one of our brilliant volunteer contributors, Lisa Kava , and brings together much of the key information needed to help bring policymakers up to speed on IACCs, so they can understand the urgency and opportunity of seizing this moment to tackle them.
Going forward, we will continue building on CrunchME’s layers of information and developing our community of contributors.
We also need to fundraise ourselves. So far, we have worked without a dollar of external funding. That isn’t a sustainable situation, especially if we wish to grow our impact. Finally, and this goes hand-in-hand with fundraising: we believe there is opportunity to build some extremely useful digital tools to help scientists spot funding opportunities that fit their research.
For the broader field, while it’s important to maintain pressure on politicians and public funding bodies, I also think there is much greater potential for research to tap into private and philanthropic funding sources. I think the other mega-trend over the coming years is going to be artificial intelligence, for better or for worse. At least in the domain of IACCs, I think there is a huge opportunity to put it to beneficial use. But again, that depends on scientists being able to do the ground work of gathering well-organized and relevant data.
CrunchME will look to amplify the positive in that trend for all people with IACCs to help accelerate progress, and make meaningful treatments a matter of years rather than decades.
Learn more about CrunchME at their website. The project is accepting donations here. If you are interested in becoming a volunteer contributor, please email rory@crunchme.org.
Rory Preston is a data scientist and founder of CrunchME. He developed ME/CFS in 2018, and was previously the data science lead for Visible Health.
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[…] it is unlikely that the number of people with Long COVID has fallen sharply, there are currently no up-to-date statistics on the number of people with the disease in the […]