Thank you for taking the time to look at the site, and for the criticism. I genuinely appreciate it.
A brief note on where this came from. I have been ill since 2015. Before that, I had never heard of ME/CFS. Once I became sick, I ran into the same problem many patients do: the information landscape was fragmented, the research was difficult to navigate, the language was often technical, and it was surprisingly hard to find clear overviews that were both serious and readable when one is cognitively limited.
Over the years I started collecting papers, links, notes, classifications, and summaries for my own use, simply because I needed a way to keep track of the field. CFSMEATLAS grew out of that private effort. The motivation was not to present myself as an authority, but to try to build something I had needed myself: a more structured, navigable, and transparent way into a very difficult research landscape.
The project is independent. I pay for it myself and I do the work myself. It is not backed by an institution, not funded by a company, and not intended as a substitute for specialist judgment, primary literature, or careful peer review. It is a new and evolving public knowledge project.
What I am trying to build is, in practical terms, an ME/CFS evidence atlas: a large structured research corpus, public study pages, topic pages, guide pages, and an evidence layer that tries to distinguish between what is established, what is emerging, and what remains uncertain. At the moment the site includes thousands of public structured study records and is built on a much larger ingestion layer behind the scenes. The ambition is not simply to collect volume, but to make the field more legible without pretending it is more settled than it is.
That said, I think some of the criticism here is fair and useful. In particular, questions about trust, review depth, classification quality, PEM tagging, and the exact role of AI in summarisation and structuring are legitimate. I do not take those objections lightly. If anything, they point to the areas that need to become stricter, more transparent, and more editorially legible. My intention is not to let machine-generated structure masquerade as scientific certainty. The intention is to build a system that can become more robust over time, with clearer distinctions between machine-assisted processing, human review, and authored synthesis.
The broader vision is simple. ME/CFS patients should not have to reinvent their own knowledge infrastructure from scratch while severely ill. If this project becomes useful, I hope it can gradually become a calm, public, and trustworthy place where patients, families, clinicians, and researchers can orient themselves more easily in the field. But it is still early, and it will only improve if it is tested, challenged, and corrected.
So I am genuinely grateful for serious feedback, especially when it identifies concrete weaknesses. That is far more valuable to me than praise. The project is meant in good faith, and I would much rather make it stricter and better than defend weak points out of pride.
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