I'm disheartened to read your criticism. I'm one of the contributors to MEpedia and I think you have misunderstood both the aims and function of the project. MEpedia is an encyclopedia, so it does not express views and it certainly does not recommend treatments. It exists to state the facts, and all statements made should be referenced with a citation, just like Wikipedia. If some patients are using treatment X (whether of value or not more generally), then it should have a page, and that page should include the evidence. Many patients would agree that most ME/CFS research is poor - too small, badly designed, not replicated, bad cohort definitions, etc etc. But there is still value in collating it all by treatment, body system, researcher, etc, so people can make an informed choice and easily educate themselves about it. The Rituximab page specifically refers to the risks and links to resources, and also some content on that page was contributed by Jonathan Edwards. Other pages have had contributions from scientists. Any page for a dangerous/poor treatment should state clearly that it is dangerous (with evidence) or that there is no evidence at all of efficacy. If a page does not say something like that, then that is an improvement that needs making. MEpedia pages are there to provide the facts (or as close as we can get to them) and yet it takes time to collate them.
A very deliberate decision was made last year to label the treatments category "Potential treatments" so MEpedia is clear that these are possibilities. If there is no evidence at all for a treatment (even anecdotal) then it may well make sense to consider a new category for "Ineffective treatments" or "Treatments of unknown efficacy", and in tandem treatments with no evidence could be removed even from "Potential treatments".
I would hope that patients would assess the value of MEpedia in terms of its long-term aims, rather than criticise it at this early stage for not being everything it can be. It is but a young project. Many patients, including me, are working very hard to improve the content and it will, literally, take years to build the knowledge base into what it needs to be to serve our aims. My hope is that not too far into the future you can open a page like the mitochondria page and see a complete list of EVERY study on ME/CFS and mitochondrial function, read clear summaries of all the findings with clarity about what this may mean, ongoing unpublished research and explanations to help the reader understand. And I would also like to see, as has been suggested, information to help people assess the reliability of the study, especially to clearly state the disease definition used. Pages like that one are especially important as areas of active research, so that new findings can be added. Right now there is nowhere online where you can easily find that information in one place, and that is the aim of the project. I have so often had that experience when I ask myself things like "where was that danish study on quality of life?" or "I've lost track, how many Rituxan studies have been done? Are more ongoing?".
MEpedia is a wiki, which is very, very different from all other online systems like blogs and article sites for the fact that ANYONE can edit a page (yes, without even signing in). All edits are reversible so despite this free-for-all it is a very safe and effective way of allowing disparate groups of people to contribute knowledge. So MEpedia is a community effort that only exists because patients contribute to it. There are no editors, no approvals, no structure at all, it's just patients (on their better days) coming in, and taking a bit of the valuable knowledge they have in their head and putting it into MEpedia, for the wider community to benefit from. So if you read an MEpedia page and think "well, this is not very good" then that is the page asking you, imploring you, to click edit, and fix it, as a gift to the community - add the study, fact or reference so it's easy for others to find in future. I so often see patients who have the most amazing personal collections of studies, charts, articles, quotes, interviews, paper clippings etc, but it's all scattered around and often held privately and by doing that, we reduce the value and prevent people using it. Unfortunately, in my view, our community has been a bit slow to seize these modern tools for knowledge sharing and making use of them. And I've come to believe that the wiki system (designed in the early 90s) could not have been designed better for ME patients if the inventors had tried - it allows patients to dip in and out as they please with no commitment required, no hours of operation, no management, no approvals, you just click Edit and type. MEpedia is not much more than 6months old and it is truly amazing to me how good some parts of it are given there's been no over-arching strategy and it has simply evolved and improved as various patients have quietly contributed towards it. Even if you disagree with the project aims or feel it hasn't progressed fast enough, I hope you can recognise the significant commitments that patients have made to it. Of course many pages need work, but that's the nature of a wiki.
Something I have realised working on MEpedia is how crucial it is becoming not just for documenting the science, but also the history and collating facts, figures and resources for lobbying purposes. You suggest it exists only to document alternative health treatments and yet that is a tiny part of its purpose. The primers for journalists, doctors, carers and the public have evolved quickly, and are extensive. Information about research spending per patient, or research patterns historically are vital pieces of information for patients to have when they contact their political representatives. MEpedia is a toolset, for all of us, and by growing and improving it, we are arming patients with a much wider range of tools to argue their case, educate themselves and bring about change. MEpedia is a community resource, a shared brain for all our collective knowledge - about the research, the treatments, the scientists, the (horrible) history, the politics. The more I edit pages, the more powerfully this is hitting home for me - MEpedia is bringing together and collating all the key information in our community in a way that has never been done before. It will take time.
Skippa says:
"By the way, whilst we're on the subject, the whole homepage is a bit of a mess. What about a where to begin or start here section, with nice big links such as what is me? and perhaps even controversy."
Please give us a chance, it is a huge project, absolutely massive and we need help, we cannot physically do everyone at once. I am approached several times a week by people telling me MEpedia needs improvement and can I make edits they suggest, but like everyone else contributor's time/energy are limited and where you see failures in specific areas, they are busy working on fixing things they found themselves in other areas. But I like your ideas about the home page and I would be very pleased if you could help us make it better, you are right it can be a lot better. This point you make about the home page is one I strongly agree with and it's something we've struggled with for some time. The reason the home page is huge and link-covered was to make it easy to see which pages had yet to be created (the red links) and yet as hundreds of pages have now been created there is less need for that. Initially MEpedia's home page was laid out to assist contributors, but now the pages are becoming more useful and trustworthy (not all, for sure) it must mature to better suit the needs of non-contributor visitors. One option that's been discussed is to follow a model a bit more like Wikipedia's home page and include higher-level sections highlighting certain content, which for MEpedia might include a section of pages on topical subjects (PACE, Ronald Davis, Robert Naviaux, for example) and then to make the various primers much more prominent, so that actually the home page is designed to guide the various types of visitor to the right place (researchers, doctors, journalists, politicians etc).
MEpedia is a wiki, so it is never finished and always needs improving and is forever evolving. Every day patients are editing pages so daily it gets better, with people squirrelling away their knowledge into the shared knowledge. Everyone will see improvements needed to every page, and that is a reminder of how much there is left to do, and a sign of how much better it will be as it matures. This project is profoundly important to us in achieving our goals of increased understanding of the severity of disability and research funding so I encourage you to jump in and help drive it forward.
Here are some pages that are a bit more where they should be in terms of content:
http://me-pedia.org/wiki/PACE
http://me-pedia.org/wiki/Mitochondria
http://me-pedia.org/wiki/Rituximab
For those who are interested in contributing and improving pages, the contributor forum is here
http://my.meaction.net/local_chapters/mepedia I and others will do our best to help you get going. There's also an intro page for contributors here
http://me-pedia.org/wiki/How_to_contribute If you want to give feedback on specific MEpedia pages, please do post to the contributors forum.
Apologies for the long post (my brain is now duly fried) but I wanted to do my best to address the criticisms (some of which are absolutely fair), and explain hopefully more clearly why this project is so incredibly important to bring about change.
Certainly there are plenty of errors in Wikipedia at any given moment in time. This does not prevent users from fixing them.
