Question; Is there an archive/database containing all research on ME? I found this data archive for cancer it looks very good (for someone who has no science background). https://datacommons.cancer.gov/cancer-research-data-commons Is there a roadmap/standard in general for diseases that covers what elements of disease have to be researched to get the full picture of disease?
I remember a few years ago thinking such a database would be a good idea, then I decided there was so much research, a lot of it very poor, that perhaps it would not be so useful after all. However as the biomedical research into ME/CFS has increased and now there is the Long Covid research too it would be interesting to have an overview, though presumably more can be now done by automated search algorithms.
Rather old now but a number of years ago ME Research UK attempted to compile all relevant research into some PDF summaries. The first PDF covers 1956-2016, the second covers 2017; they seem to have discontinued the effort, as I cannot find anything in this series after 2017. There's no ME/CFS specific online database that I know of. Research Publications 1956-2016 | Research Publications 2017
Good points; Sometimes I have seen researchers say things like, ‘considering the research in ME’, and on that basis they make research decisions. I wonder if they do a pubmed search or is there a secret database somewhere haha. It would provide a complete overview of what studies have been done already, in what area. What has not been done etc.
Are you thinking of something like this (Common Data Elements for ME)? note - apparently revisions are underway https://www.commondataelements.ninds.nih.gov/Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
I loved @forestglip ’s idea of creating a massive database with all the findings from biomedical studies. Although it would obviously be a massive undertaking.
there was this brilliant database (http://www.ronnieschuurbiers.nl/scienceforme/) but it doesn't work anymore. He has a blog also but when I try to access it it says its unsecure. It's a shame that the database site (original Science for ME) has been lost; I suggested many years ago that we should ask him about it with view to a possible collaboration or whatever. Maybe still worth trying although there are now quite a few years that it wont have been updated................ although it'll still be more up to date than the Cochrane review!!
not all of the publications would necessarily be open access so some things would have to be excluded
I tried to look him up. At one point he was in the steering committee of mecvs foundation in the Netherlands. At his insta (not sure if it is him) his last post was in april 2024. I do not have insta though.
I mean more of a research library of the research that has been done into MEcfs. The link I posted on cancer research seems to be more of data elements, this is not what I meant. Apologies for the confusion.
