But Wikipedia itself is loaded with misleading information. It is usually corrected by the community of users. It was initially even more full of errors but, as it became more popular, those who run it were able to more closely moderate it. The same could be true for ME-pedia. We have a community full of knowledgeable people who can jump in and help.
The question surely is about what MEPedia is, not
what it could be, but
what it is. Yes, the ME community has people with relevant expertise, but are they willing and able to devote the considerable time and effort needed to moderating it and producing high quality accurate material?
When a resource is being turned to by patients for medical information, I think the owners of that resource have a responsibility to ensure it is kept as up to date and scientifically accurate as possible. I'm not sure MEAction has, or should have, the resources to devote to that with all the other things MEAction does.
I find most things on ME-pedia to be helpful. There are some huge omissions, but most of what I look for is easily found. No one should see it as the ultimate source of information, but for me, it’s a valuable resource.
I agree it's a useful resource on some things. For example historical information about people and ideas in the ME world, and links to things like diagnostic criteria, IOM reports etc.
I think the mistake MEAction made was to expand it into biomedical research areas that are either not well researched or peripheral to ME. The selection of topics and research papers to include and the way summaries of that research are written can give a very distorted view of the quality of the research evidence and the relevance or otherwise of those topics to ME.
Moderating such a jumble of scientific topics that may or may not be relevant to ME, and may or may not be supported by any good quality evidence would require a team of dedicated moderators not afraid to upset people with particular theories about ME by deleting or significantly modifying their articles.
It reminds me a bit of the way politicians without a scientific background approach science. So often I have seen politicians deciding a policy on financial, ideological, or political grounds, then looking for any bits of science that support their view, regardless of quality, and using that to say they have evidence based policy.
We see this in ME as well, though for different reasons. Individuals find their own ME improves or worsens after some particular event whether a trigger like an infection, or a treatment like a drug, nutrient, alternative therapy or surgery, and become enthusiastic promoters of theories built around that treatment. It is natural for those individuals to seek research evidence in support of their theory, and write articles for MEPedia that give a biased view based on the research, of whatever quality, that seems to uphold their view.
Unless a team of moderators can see this bias happening and counter it with an unbiased editing policy, MEPedia is in real danger of becoming a collection of poorly evidenced unproven hypotheses propped up by inadequate or irrelevant research, masquerading as scientific articles.
