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Announcing MEpedia: a knowledge base for ME science and history

What could happen if we aggregated all of our knowledge?

When I first got sick in 2011, my primary care doctor and specialists had no idea what was wrong with me. The internet was my salvation, as it has been for so many of us.  There was a huge learning curve, especially since the traditional sources of information are often inaccurate, misleading, and sometimes dangerous.

What if we could take all of the information we have consumed and create one massive, interlinked, and structured knowledge base?

My salvation was websites like Phoenix Rising, Health Rising and the Hummingbirds’ Foundation for ME and countless blogs. And later, Heal Click (now AnyTreatment).

What if we could take all of the information we have consumed from all of those years of hundreds of people reading and writing about thousands of news and research articles across all of our forums and blogs and Facebook pages, and create one massive, interlinked, and structured knowledge base?

What if from now on all of us, every time we read or learn something new, could contribute that new piece of knowledge, one sentence at a time, to a central space that could remember and relate it to other knowledge?

We don’t really need to imagine; this is what thousands of Wikipedians around the world have been doing for over a decade. It’s my dream to use these same tools to harness the logics and intelligence of crowdsourcing for our tiny sliver of knowledge, going deep on the topics and ideas that matter to us.

Announcing MEpedia

To that end, we have launched ME-pedia.org, a wiki encyclopedia for the ME and CFS community.

If you would like to contribute, we also recommend you also join our group of MEpedia authors on #MEAction. Members there can also help you get started. (See also: How to Contribute.)

Core principles

We are still writing our editorial policies, developing the site’s tools, and working out technical kinks.

That said, here are some of the principles that I think are crucial for making this project a success:

A commitment to evidence: That means letting go of certainty and grappling with complexity and contradiction, reporting negative and null results, not simply those that support a given theory.

A commitment to transparency: Transparency means citing every fact – whether a fact is one that has existed in high school biology textbooks dating back to 1930s or is an observation made by “some patients,” it can and should be cited.

It also means contextualizing it so that it is easy for a reader to discern the quality of the information. There are differences in the quality of information gleaned from a small study versus a large one; a study that used subjective versus objective measures; a study that used the Oxford Criteria or the Canadian Consensus Criteria; a finding that was found only once or is supported by several studies.

That our evidence base is weak after decades of underinvestment in research does not mean that we can’t use it – simply that the limitations must be made abundantly clear.

A broad view: Fortunately, we know a lot more about the immune system, the brain, the gut, the microbiome, the mitochondria, our cell membranes and the role that all of these play in other inflammatory or autoimmune diseases, at least compared to ME or CFS. We can assemble that information and relate it to the studies about ME and CFS we do have.

Room for debate and speculation: That said, so much of what we observe in our own bodies has not been scientifically proven or explained, not in small part because there has been so little research.

We need to find ways – on pages distinct from the general knowledge base – to collate our observations and hypotheses, allow a little more room for speculation, while summarizing the literature that both supports and contradicts those same observations and hypotheses. Anecdote has gotten a bad name but an anecdote is a single observation and observations are how we generate testable hypotheses. We are at the very beginning of this field and have more access to ourselves (the test subjects) than anyone.

So to allow us to discuss what has not been proven in a way that is difficult to do in a traditional Wikipedia article, we’ve created a category of pages called Medical hypotheses.

Balancing the technical with the basics: While the dream is to have a literature review so accurate, comprehensive, and technical that it can serve as a launching point for new scientists entering the field, those pages on basic science should live alongside pages that any patient at any level of exposure to science can find useful and accessible. (We haven’t figured out how to balance those two goals yet but would love your help  figuring it out!)

A multilingual future: Most of the scientific and medical information about this disease is in English. This is a huge barrier for patients in countries where English is not widely spoken.

Once the ME-pedia.org project has reached a certain maturity in terms of regular contributors and quality and quantity of content, we hope to open it up to other languages, to allow patients to translate content from English ME-pedia and write content in their own languages. MediaWiki, the software that powers Wikipedia, makes this easy. Wikipedia has already done this brilliantly.

Jump in!

We’re at the very beginning – we’d welcome your feedback, your support, and your contributions. Let’s see what we can build together!

 

Categories: #MEAction Projects, All News, Featured news, Global, How-to guides

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40 comments on “Announcing MEpedia: a knowledge base for ME science and history
  1. Ollie C says:

    This is an incredibly valuable initiative and I very much hope many other patients will feel able to get involved. Just like Wikipedia anyone can edit a page on MEpedia, so if someone sees a mistake, or wants to add a new section or page or citation, it’s easy to do. Each page also has a “Discussion” tab for more informal discussion about the page, and this is a good place to post suggestions for improvements (remember to type four tildes after your comment to sign it ~~~~). Everyone can contribute in some way, whether writing pages, fixing typos, suggesting links to include (eg a paper or Youtube interview), reformatting messy pages, or proof-reading. When you see valuable resources, please check they are listed in MEpedia, so others can easily find them.

    The forums and blogs in our community are very valuable and MEpedia is filling a different need. It is highlighting the best and most important resources in each specific area so that information is very easy to find, whether it’s a specific scientific paper, a researcher, a clinic, treatment, etc. For example if you look at an MEpedia page for a researcher you should expect to find a link to their institution or Wikipedia page, a list of their most notable published ME/CFS papers (and co-authors), links to any recorded talks or interviews, media coverage of their work, and ways to engage with them on Twitter, Facebook etc. Similarly if you look at a page on an aspect of the disease you can see notable studies, researchers working in that area, talks, etc whether it is autoimmunity, exercise, PACE, Rituximab, Naltrexone, etc.

    Another aspect of MEpedia is to document the history of our disease and community to preserve it and create an archive record – including the early outbreaks (eg Royal Free Hospital 1955), Melvin Ramsay, the work of Elaine DeFreitas, the renaming the disease to CFS, and so on. This is especially vital for newly diagnosed patients to see the disease history and understand its context.

    Please come and help us improve MEpedia!

  2. Sally Burch says:

    This is such an exciting development by ME Action. Although I would love to be involved, I must recognise when I need to hold back; and so for now, I’m just an interested and supportive observer. Great work so far team! 😀

    1. Hi Sally. Thanks so much for your support! I know a lot of folks won’t have the time to be full-time editors, but the beauty of this kind of software is that it can be built literally a sentence at a time. So every time you read something interesting, you can write a sentence. Add a reference and the others can come after you and build on it.

      Hundreds of people donating 10 minutes of time a month, or even every few months, can make a huge difference!

  3. Ann OConnell says:

    A Brilliant idea to help ME Sufferers understand all the information from fellow sufferers and ME Specialists, all in one place.
    Thank you

  4. Sarika says:

    Brilliant Idea! Will there be a place for published articles that can not be altered? Probably a silly question… But have to ask.

    1. Hi Sara. We haven’t considered making any part of the Wiki uneditable. What did you have in mind? MEAction is a great place for publishing articles, pages, and producing handouts that are uneditable. If we wanted to create basic information for patients, for example, we could always repackage Wikipedia content and post it here in a static page or create a PDF. The idea behind a living page is that it can constantly be improved as new information becomes available or as new contributors bring their expertise to the project.

      1. Sarika says:

        Hi Jen,

        I am not very computer savvy when it comes to documents…will there be a resource center as part of the wiki where one can find published articles and papers that should not t be altered. I understand now, as Ollie posted on other replies that there would be links. Apologize for my lack of computer knowledge…..although back in the day I could do some mean drawings and create buildings on the computer. Well this project is a great incentive for me to learn so I can contribute. Again Brilliant Idea and it seems that you are already getting great support!

        1. Brett Zamir says:

          Sarika, I don’t know the project plans, but the wiki software does technically allow file uploads, but it seems that it is not a feature available to the public. I see two files uploaded (presumably both have admin privileges): http://me-pedia.org/index.php?title=Special:ListFiles . As mentioned by others here, http://archive.org does allow some retrieval of past versions of pages on the internet (which have not been explicitly blocked by the site), but I have found its bot is not 100% consistent in visiting all pages, at least on a given frequency, and sometimes data is not available despite an attempt having been made to archive. It is far safer to make our own copies (and also offer a dump of the site contents (excluding user info) for downloads by the public!), assuming the articles in question have no copyright issues for redistribution (and a special note would no doubt need to be made that the site license doesn’t apply in the case of such articles).

        2. Brett Zamir says:

          Hi Sarika,

          We have now enabled file uploading privileges to registered users so published articles could be uploaded, but as with all contributions, the copyright of the content should permit this redistribution, and if necessary, one should make a note of its copyright status if different from our license terms (e.g., if the author gives permission but under their own terms, we can post it and indicate their terms).

          One can also re-upload (i.e., “overwrite” the file at the same location), but a history is kept of the files, so we should always be able to revert back to an old version. This is different from the wiki pages where regular re-editing at will is intended, as file reuploading is really just meant for fixing problems with a file (e.g., if the first upload had a bad image resolution).

    2. Ollie C says:

      Sarika, all articles are editable by anyone, BUT IP addresses are logged and a full history is retained of every single edit. So just like Wikipedia if a page was maliciously edited, it can be reverted and the person blocked. It is a key principle of systems like Wikipedia and MEpedia that anyone can edit – it democratises the writing, and allows very large numbers of people to contribute towards creating a valuable resource without much coordination at all – anyone with Internet access can contribute.

      1. Brett Zamir says:

        Unless you add some special monitoring to the software, the software only tracks IP addresses for unregistered users, allowing privacy to those who register (though registered users can be blocked too of course). There is always a risk of temporary spam, but with more users, people can also fix things more quickly too…

  5. Suella Postles says:

    I would be happy to contribute links to articles and videos that explain situations and practices which are both healthful and contrbute to the understanding of how we can influence our improvement.

  6. Scotty81 says:

    I think this is a great idea! I used to work for someone who once said “none of us is as smart as all of us”, so pooling knowledge will speed up understanding.

    What I wanted to recommend is that we group diagnoses (at least) by functional category. In essence, I propose applying a functional medicine category to how our this knowledge is organized. The Institute of Functional Medicine has a good model of how they think of the body systems (e.g. communication system for thinking of things like neurotransmitter issues, and energy system for thinking about things like mitochondrial dysfunction).

    If others think this is a good idea, I can post the 7 or so systems with the areas of the body that lie under each system.

    Regards,
    Scotty81

    1. Brett Zamir says:

      Sounds like a good idea to me! The more (logically consistent) ways of accessing the information, the better…

    2. Ollie C says:

      This sounds like an interesting suggestion. Come on the forums and give us some more detail on how you think this could work? http://my.meaction.net/local_chapters/mepedia

      We’re planning (in time) to make good use of MediaWiki Categories, so categorising content across categories and subcategories for ease of locating information.

  7. John Gabor says:

    A very good project. Most Facebook groups and pages have a files section, sone better organized than others. Like Sally, I am not currently up to be a contributor.

    1. Hi John. Thanks so much for your support! I know a lot of folks won’t have the time to be full-time editors, but the beauty of this kind of software is that it can be built literally a sentence at a time. So every time you read something interesting, you can write a sentence. Add a reference and the others can come after you and build on it. Hundreds of people donating 10 minutes of time a month can make a huge difference.

    2. Ollie C says:

      It is important to say that MEpedia is not aimed at replacing or re-creating other projects. MEpedia is the glue that links existing resources, so the bulk of the content is links to resources elsewhere – whether on PubMed, clinicaltrials.gov, YouTube, Facebook, Twitter, blogs, media sites, and to the resources that you mention John. There are of course places when analysis needs writing to provide context, link concepts and explain information to the reader, but in many ways MEpedia is about joining the dots between what already exists. For example, where ARE all the best resources around the autoimmunity hypothesis? Not just published studies, but blogs, media coverage, proponents, critics, planned trials, recorded talks, etc.

      1. Samuel Wales says:

        this reminded me of something. web resources frequently disappear or get altered. links break too. what would be fantastic [if any techies are able] is automatically archiving external resources, with versions, like a miniature archive.org just for the links that are on mepedia.

        [doesn’t necessarily need to be publically accessible, just stored as a precaution like we each store things privately when we screenshot, cache stuff on disk etc. not saying we have the resources, just something to consider. a 1tb hard drive will store years of non-video documents.]

        1. Ollie C says:

          This is certainly a concern and I’ve already seen several resources that have moved or vanished. But I think we must be careful to decide what MEpedia IS as much as what it IS NOT, so as to focus efforts and not bite off more than we can chew. My view is initially we should focus on building the knowledge base, and archiving is something we can look at later. Where resources have vanished, we can usually link to an existing archive like the Wayback Machine.

          1. Samuel Wales says:

            i strongly agree with limiting the scope.

            just want it noted someplace that resources and links can change or disappear for a variety of reasons including deliberate.

        2. Brett Zamir says:

          See my comment to Sarika just now about how file uploads are now enabled to regular users, so archiving is now possible (as long as copyright permits our distributing the material, and as long as we list any deviations from our own license, e.g., if the author gives permission but under their own terms, we should indicate what those terms are so people wishing to reuse our material do not try to use the article under the same terms as ours).

  8. Brett Zamir says:

    Hallelujah!

    I feel guilty that I did not make this suggestion earlier, as I could have at least offered the idea. Thank you for putting it into effect!!

    I have two strong suggestions:

    1. Quickly add https://www.mediawiki.org/wiki/Manual:$wgRightsText , https://www.mediawiki.org/wiki/Manual:$wgRightsPage , and/or https://www.mediawiki.org/wiki/Manual:$wgRightsUrl in your LocalSettings.php config file. These configurations make clear what the license of the content will become. I suggest something at least as unrestricted as on Wikipedia. If you don’t add this, each user’s contribution will, I believe, be under their own copyright, and no one will have the right to redistribute the content without author permission (unless under fair use).

    2. In order to avoid impactful vandalism, I would suggest locking the main page, as well as the About, Privacy, Disclaimers, and any other site policy pages. For the main page, you could use templates and not lock the templates, bearing in mind that that particular content would not be safe from temporary vandalism. Users could still propose edits to locked pages by copying the source to their user pages and referencing it in the Talk page.

    1. Ollie C says:

      Brett, your suggestions are great. I think we need your help 🙂 Come and join the discussion forum? http://my.meaction.net/local_chapters/mepedia

  9. Samuel Wales says:

    hi jennifer,

    very excited by this! much needed! excellent start already! i like the ideas! cannot contribute at this time for health reasons, but if i could, i would be all over it.

    here is an old, tangentially related idea on my blog: http://thekafkapandemic.blogspot.com/2012/10/the-whole-thing.html

    btw, the text entry boxes above for name, email, and website are inaccessible to me. i use large fonts and only the tops of the letters show.

    beware shills, but you knew that.

    1. Ollie C says:

      Thanks for posting Samuel. I read your blog post with interest – you were way ahead of us 🙂 I think a lot of patients are aware of the sheer volume of important resources out there, but also of the lack of a single successful project to join them up so information is easy to find. A wiki is almost the perfect tool to do this as it democratises a project no single person or organisation could complete on their own. Many patients would like to know about Rituximab for example, but have struggled to find a good single source of reliable information (with links to further sources of reading). MEpedia is designed for patients, but also for professions – journalists, new researchers, and doctors. eg we’re building a page “Notable Studies” to include the more interesting published studies about the disease.

      Of course the irony is we’re all sick so building it is hard, but if at any point you can offer even an hour a week to help in any way, that would be great.

      1. Samuel Wales says:

        very excited by mepedia. and allowing people to reply by replying to email is excellent.

  10. Ashleigh B says:

    This is amazing. I actually considered doing this myself so thank you for saving me a job 😛 I will hopefully be able to make some valuable contributions along the way 😀

    1. Ollie C says:

      I’m happy to hear that Ashleigh! Come join the discussion forum http://my.meaction.net/local_chapters/mepedia
      To get creating content just click a red link (to create a non-existent page) or open an existing page and click edit!

  11. rebecca says:

    Hey. This looks great. I would love to pitch in. Let us know how we can volunteer.

    1. rebecca says:

      Oops…just saw the link to volunteer.

  12. Scotty81 says:

    Hi, Per my earlier response, I am suggesting some content hierarchy based on the body system. This is based on the Institute of Functional Medicine’s system model that I’ve gleaned from their website and several other documents.

    1. Assimilation System. Includes: Digestion, Absorption, Microbiota/GI, Respiration. Subtopics such as Intestinal pathogens, Allergens, Intestinal permeability, Microbiota imbalances, Gut dysfunction, IBS, IBD, Gluten sensitivity, GERD,

    2. Defense & Repair System. Includes: Immune, Inflammation, Infection/Microbiota. Subtopics such as Immune dysfunction, Genetic predisposition, proinflammatory diet, food allergies, intolerances, infections, hormonal imbalances, nutritional insufficiencies, xenobiotic exposure, environmental factors, inflammation, immune dysregulation

    3. Energy System. Includes: Energy Regulation, Mitochondrial Function. Subtopics such as Mitochondrial dysfunction, Oxidative Stress, Nutritional Influence, Increased energy demand, Neurodegenerative Disorders, Toxic Exposure, Headaches, ATP Production, Genetic Variations, Inflammation

    4. 4.Biotransformation & Elimination System. Includes: Toxicity, Detoxification. Subtopics such as Toxin Exposure, Detoxification Issues, Neurotoxicity, Impaired biotransformation, dysbiosis, impaired excretion, nutritional deficinecies, Immunotoxicity, Autoimmunity, Mitochondrial dysfunction, Endocrine Disruption, Carcinogensis

    5. Transport System. Includes: Cardiovascular, Lymphatic. Subtopics such as metabolic and cardiovascular disorders

    6.Communication System. Includes: Endocrine, Neurotransmitters, Immune Messengers. Subtopics such as HPATG axis, ANS, melatonin, cortisol, DHEA, pregnenolone, TSH, T3, T4, RT3, testosterone, progesterone, estrogen.

    7.Structural Integrity System. Includes: Subcellular Membranes, Musculoskeletal Structure.

    A couple of caveats. Sleep is not explicitly included here, but I believe Dr. Mark Hyman, one of the execs at the Institute of Functional Medicine puts sleep and behavior in the Communication System section. Also, there may be an 8th body system which has more to do with the emotional and psychological arena, although I would have to check on that.

    Finally, if this is of use to anyone, I would say that we don’t have to follow this rigorously. We can use it as a guideline as to how to categorize information and customize as we see fit.

    Regards,
    Scotty81

    1. Ollie C says:

      This sounds like it might make some sense, especially if it was created as Categories in the wiki into which articles are slotted. It might make it easier to navigate around subjects. It would be really great if you could come help make this happen 🙂

    2. Brett Zamir says:

      I’ve added the high level category at http://me-pedia.org/index.php?title=Category:Functional_Medicine which lists the immediate subcategories. I have not yet attached articles to these subcategories, however.

  13. Jen Jacobs says:

    This is exciting. I have possibly developed new symptoms. I’m putting off the research to find out more about these. To be able to look for info through MEpedia would be a very helpful thing for me and all of us. Thank you xxx

  14. Scotty81 says:

    I haven’t had the chance to read more about how you are proposing to design this, but I would offer the following suggestion in addition to the categories I’ve suggested above. For each article or entry in the Wiki, I propose that we have the ability to tag the article with various attributes (or meta data). That is, on one day, I might want to see what articles I could find under the general category of Assimilation (i.e. converting food into energy) and the subcategory of SIBO (small intestinal bacterial overgrowth), but limit the results to diagnostic tests. On another day, I might want to look at the Communication System and the DHEA subsystem and specifically look for treatments. So, I would propose that we have the ability to classify an article with qualifiers such as 1) diagnoses, 2) treatments, 3) research, 4) doctors/practitioners, etc. I would allow an entry to be classified with multiple qualifiers as well. I’m sure there are other categories and I would suggest looking at both Phoenix Rising and Cort Johnson’s current site to see how they classify information. I think we have to both consider how we get information into the Wiki, but especially important is to consider how we retrieve or get info out of it. To that end, perhaps some sort of front end or user interface design would be helpful.

    Regards,
    Scotty81

    1. Ollie C says:

      Probably not uncommonly for a wiki there is not much of a design process, but more that it will be “grown” over time, more organic than planned. You’ll see on the home page that many areas have been loosely split by area. There has been talk of created a whole range of wiki categories (sometimes with sub-categories) so for example one category might group all the disease hypotheses (autoimmunity, microbiome, mold, vagus nerve etc) so that acts as a kind of tagging as the category is applied within the article itself. I think you are right there are several ways to slice it, and I definitely agree the success of any information source is the ability to retrieve efficiently.

      There are so many good ideas like this and I hope they can be implemented, so please come on the forums and started editing articles, we all have our individual contributions to make (despite nearly all being so ill!).

      1. Ollie’s example is a good one.

        See the category “medical hypotheses”

        Medical hypotheses: Amygdala hypothesis, Autoimmunity Hypothesis, Fatty acid hypothesis, Hygiene hypothesis, Mold hypothesis, Infectious disease hypothesis, Ken Lassesen’s model, Methylation cycle hypothesis, Microbiome hypothesis, Patricia Kane protocol, Vagus nerve hypothesis, Viral onset hypothesis

        We’ve added code to the bottom of each of these pages that allows you to view all of these pages as part of a category called “Medical hypotheses” http://me-pedia.org/index.php?title=Category:Medical_hypotheses

        The major source of navigation will of course be through internal hyperlinking just as it is on Wikipedia. Wikipedia does however make great use of categorization and taxonomy (which you’ll find on the right hand side of many pages). But I think while some forms of categorization can be built in from the get-go, others need to be superimposed once we have gotten more content going.

        And yes, please come over to the MEpedia group to offer more suggestions (http://my.meaction.net/local_chapters/mepedia) and help us get writing!

  15. As long as our charity is acknowledged, ME Action has permission to use/link to the material on our website. You may be particularly interested in the ‘Documents’ page: http://www.thegracecharityforme.org/documents.asp

    There you may find our reply via the online BMJ, regarding Chalder’s claim in the Lancet of a ‘fear of exercise’ in M.E. suferers. Our reply begins as follows:

    Our charity would like to add its voice to the condemnation of the report Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial, (Chalder et al., Lancet January 13 2015). This report is yet another attempt by the Wessely School to undermine both science and the character of M.E. sufferers (Myalgic Encephalomyelitis).

    Further information on our website.

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