Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

Phoenix Rising Wiki Project

Discussion in 'General ME/CFS News' started by JenB, May 30, 2012.


If Phoenix Rising had a wiki I'd probably:

  1. Read it often and keep on top of updates

  2. Read it every once in awhile, when I'm looking for specific information

  3. Read it not much. I already get all the info I need on this here forum!

  4. Be an active contributor

  5. Be an occasional contributor

  6. Use it as a reference tool

  7. Use it to help organize M.E./CFS-related projects

  8. Not sure! I'll have to see what form it all takes

Multiple votes are allowed.
  1. JenB


    I'm working on a project to set up a Phoenix Rising wiki (or two), and we'd love to hear your ideas!

    Here are a few questions to get the conversation started:
    • If there was an open Phoenix Rising wiki, what would you use it for?
    • What kind of information would you like to be able to read on a wiki?
    • What kind of information would you like to contribute to a wiki?
    • What can you do with a wiki that might be hard to do with this forum? What can you do in this forum that might be hard to do on a wiki?
  2. maddietod

    maddietod Senior Member

    East Coast, USA
    What is a wiki for a group? I only know wikipedia for articles and wiki-hows.
  3. JenB


    Great question! A wiki is "a web site developed collaboratively by a community of users, allowing any user to add and edit content."

    So one possible outcome of a collaborative project is an encyclopedia, like Wikipedia. However, there are many other types of collaborative projects that can be facilitated using wiki software.

    Our question is: what are the projects that the Phoenix Rising community might like to nurture using a wiki as a tool?

  4. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Mackay, Aust
    I would be a contributor, as long as I was assured that non-patients, with non-patient agendas, are not allowed to restrict or control content. This has occurred on Wikipedia, probably by some of the same parties that have attempted to do so here.
    Sing and SickOfSickness like this.
  5. Bob


    England (south coast)
    Hi Jen, may I point you towards my wiki pages from the previous forum, which are awaiting re-housing: International Conference on Human Retrovirology - List of Abstracts

    I'd like to do further work and editing on the 'ME literature' wiki, once it is a wiki page again.

    There are often lists that I would like to create on a wiki page.

    One example of an ongoing wiki project that we should have on this forum is a diagnostic criteria wiki.

    The main problem with using the forum to create ongoing projects or lists, is that there is a time limit on editing posts.
    Sing and SickOfSickness like this.
  6. The idea to launch an open ME wiki has been proposed many times, including by some of the many patients that got banned from Wikipedia, but so far it has not been launched. Maybe this time!

    Meanwhile, we have (mainly written in 2008/9, so much has changed again since then).
  7. JenB


    Guido--this is definitely happening this summer! (Over my dead body, on the life of my unborn child, my word is my bond, etc.)

    Setting up a wiki platform is actually only a small part of the task. The lion's share of the work is thinking about the content + the people side. How would we use the wiki? Who is it for? How do we make it an open tool that anyone can read and contribute to, while making sure it remains a safe space for a range of ideas? What are the norms and how will they be enforced?

    On the encyclopedia side, how might it be like Wikipedia? How would it need to be different?

    And if, in addition to an encyclopedia, we had other wiki-powered tools, what might they be used for? I see, for example, in this poll that at least two users would want to use a wiki to help organize ME/CFS-related projects. What type of projects might they be? Would other web tools might be useful to support those projects?

    Bob--those links all look like a great start!

    Thanks, everyone, for your feedback.
  8. SpecialK82

    SpecialK82 Ohio, USA

    Ohio, USA
    Thanks for taking this on Jen!

    What I have often wanted to see is all of the current research projects happening currently. I'd just like us to keep an updated list with column titles such as:

    - research project (link to full description)
    - names of researchers/or the institute sponsoring it
    - $$ amount of project
    - how project is funded
    - deadline for patients to participate (if applicable)
    - projected completion date
    - projected publish date/ or date results to be released
    - how/where will results be make public
    - status (if project is not completing/delivering on time - someone to explain what is happening)
    - etc.

    So every CFS/ME research project would go on the list - the CAA's, Lipkin, Simmaron, Endlander, etc.

    If you guys are like me, I can't remember what is going on and when to expect results. I want to make sure that we can keep an eye on the dates and follow up with the research teams if the item is not progressing.
    Bob likes this.
  9. A set of webinars, together covering the entire topic of ME, would be a great thing to have.
    Sing and lnester7 like this.
  10. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Mackay, Aust
    I find this discussion a little confusing. By definition a wiki has Everything either contained in it or linked from it. No need to discuss. Just do it. Start off with an index. Everything is indexed. You build the index as you go along. You don't need to add texts, videos etc to subject pages.. just the links - but you can if you want to. Links can also be made to posts and threads in the forum and blogs, but the actual blog or post text does not have to go into the page.

    All Cort's resources can be linked from a pages that have been indexed in the wiki. No need to shift them over.

    Classic example of a wiki for me/cfs can be found at,15.0.html
    although some of the navigation needs cleaning up. Left hand navigation bar needs fixing (easy) so you don't have to put home or index at top of each page.

    The wiki pages should only contain factual summaries, but everything is annotated or linked.

    Note the use of Favorites (pages most visited).

    Example of index entries

    ME/CFS Description
    ME/CFS Epidemiology
    ME/CFS Current Studies
    ME/CFS Biomarkers
    ME/CFS Researchers

    Upcoming Events (page can be linked to forum threads etc)


    Whittemore-Peterson Institute

    For example the webinars Guido mentioned could be provided as a link or reference on the ME/CFS Description page. There is no need to ask Guido, just add them to the page. There will be thousands of such items that can be added in this fashion. No limit, no catering to individual taste.
    Sing likes this.
  11. Bob


    England (south coast)
    So Jen, I take it that you are thinking of an external wiki of some sort, such as mediawiki, rather than the integrated forum wiki? The integral forum wiki would work in exactly the same way as the forum itself, as it did with the last forum software. I was never told why the previous forum wiki was closed down. It seemed to be working OK, and it had some useful stuff on there, with some ongoing projects.

    So I'll answer your questions with an external wiki in mind.

    I think the content would look after itself once a wiki is set up.
    People will start projects.
    Some will be individual projects, some will be group projects, and some will be forum-wide projects.

    There's often been lists/databases that I would have liked to create if a wiki had been available.
    Like SpecialK said in an earlier post, a list of ongoing ME research projects would be extremely helpful, as an example. That could be a forum-wide project.
    And we should have other forum projects on the go, such as reference information surrounding diagnostic criteria.
    I wouldn't expect the moderators to take charge of stuff like that, unless they wanted to. It would be something that members would be able to do collaboratively.

    If you are thinking of an external Wiki, such as mediawiki, it is very flexible, and allows individuals to do their own thing without messing up the rest of the wiki.

    I think that might be a bit of trial and error, but I would have thought that individuals could use it for their own purposes, alongside group projects.

    I think that wikis are very flexible, and allow lots of different projects to be carried out without disrupting any other projects.

    It might be wise for someone (a mod or a volunteer) to oversee and maintain a main index page, or a number of index pages, to keep it tidy and relevant.
    There could be an official PR index run by the mods, which was kept neat and tidy, and an official members' index which any member could add to, and which might be a bit anarchic or messy at times.
    Or a main contents page could link to a number of secondary index pages, of similar projects that are grouped together.

    All you need to get a wiki started is an index page, or pages.

    I assume it would be for PR members. Maybe members who have posted at least one hundred posts, the same as the community lounge?

    I would have thought that it would have to be open to all members, otherwise, how you would choose who could use it or not?

    I suppose it would have the same rules, and members, as the forum does?

    There might a problem with some members whose views don't coincide with the majority?
    There might be arguments over things such nomenclature, such as using ME or CFS or ME/CFS.
    And I don't know how such disputes could be sorted out.
    Either there would have to be a voting system on each wiki page, or the member who first started the wiki page would 'own' it, or the mods would have to find some way of stepping in.

    I think it would probably be sensible for the member who first started each page to own it, and if they want to introduce a voting system to their specific page, then they can.

    There is room for overlap on a wiki... Separate people or groups can create exactly the same sort of lists etc., but in their own style.

    I expect that a load of mess will be created on an open wiki, but that's to be expected.
    There might be a certain amount of housekeeping needed.
    If pages were created by ex-members, and hadn't been updates for a long time, then mods could deleted the pages after a year, if no owner came forward.

    I can see there might be disagreements at times, in which case the moderators' might have to have the final word in order to settle disputes. I can see this causing headaches for the mods at times, so I suppose that some sort of way to settle disputes with group pages might be needed.

    If a dispute with a wiki page cannot be settled, then it is very easy to branch off from a wiki page, at any stage in its history, so individuals could take over their own branched-off pages at any stage if necessary.

    One issue that might crop up a lot is 'ownership' of individual wiki pages.
    Maybe each page should be 'owned' by the person who started it?
    Maybe a voting system for group projects, if the 'owner' agrees to that?
    If agreements can't be reached then a page can be copied and separatated out to each member in dispute.
    At the end of the day, mods will have to find some way to adjudicate over any disagreements fairly.
    If there is an 'ownership' dispute over a specific link, then that's an issue that would have to be resolved.

    But it is very easy to branch off pages, so different members can continue to develop them as they see fit.

    Well, a wiki can be designed like an encyclopedia. All you need is a dedicated index page to the contents of the encyclopedia. A forum wiki could have a selection of contents pages, which could group together similar projects.

    I think a wiki would be a very useful addition to the forum, for members to use however they wish. I can't think of any other web tools that we might need.

    (Except that someone on the 'technical support' forum said that they'd like to be able to use a more complex survey tool than this forum currently provides.)
  12. JenB


    Hi RustyJ. You're definitely right on your definition of a wiki and I cannot wait to just get started. Also agree that a lot of the materials/resources already exist, and can be linked to directly, whether on Cort's blog or elsewhere (e.g., research studies).

    However, the tech team has been contemplating various software solutions (mediawiki and the forum wiki are just one of many options). There may also be more than one wiki: a forum wiki *and* a standalone wiki. We're just not sure yet.

    I think the basic philosophy is:

    1) We can choose the best technological solution once we have a better idea of the "use cases." There are actually subtle differences between different wiki platforms, and once you choose a software, you are essentially committing to it for a period of at least several years. So we're just trying to get it right!

    2) Understanding how the wiki will be used also helps us to further our thinking on what kinds of guidelines/policies we should have for the wiki, how it should be maintained and/or moderated, and what additional resources (if any) we might need to put behind it.

    So we actually do find all of this discussion quite helpful!
  13. JenB


    Actually, maybe both. I'm very new to PR and did not use the old wiki much. Do you see a reason for having both a forum wiki and an external wiki?

    One idea is to have an encyclopedia-type wiki which is essentially a reference guide (*very* similar to Wikipedia), except that it would allow for original research.

    The confusion that I am having is this idea of how a wiki might be used for "forum projects." It seems like most of the forum projects proposed so far have been about creating reference materials: e.g., lists of open research studies, lists of books, lists of doctors. All of those "projects" could most definitely be a part of a larger encyclopedia/reference guide.

    Where the idea of a wiki might branch off into two, separate projects is if there were folks who wanted to use a wiki essentially as a collaborative tool for certain group projects where the goal was not to create reference materials, but to create documentation or facilitate collaboration around a specific action (e.g., an advocacy campaign) or other non-reference-style output. Of course, there might be better solutions for this, e.g., Google Docs, or a task manager like Flow, or any of the many other productivity tools.

    If there is no broader interest in using a wiki for these types of projects, then I think maybe a single wiki that is a reference guide/encyclopedia might be all that's warranted.
    Sing likes this.
  14. Bob


    England (south coast)
    Hi Jen, yes, I think having both might be best...

    The integrated forum wiki is very accessible and is easy and intuitive to use.
    If you can use the forum, then you can use the wiki section.
    It's also very convenient because it's integrated into the forum, and so the associated discussion threads can be 'watched' etc.
    Also, if it's like the last forum, the ownership of pages isn't a problem, because the person who starts the wiki page has control of ownership settings.

    The integrated forum wiki might be adequate for many members' needs.
    But the integrated forum wiki is not as adaptable, flexible or powerful as something like mediawiki, which like you say, could be used as an encylopedia-type resource.
    If members had access to a mediawiki, then I think it would inspire new projects.
    Most people are familiar with navigating mediawiki, and so I'm sure that it would get used.

    Yes, when I referred to "forum projects", I was thinking along the lines of reference material.
    So, yes, I was talking about an encyclopedia type of wiki.

    I see what you mean by the difference between an encyclopedia type of project and a collaborative type of project.

    I don't think I've seen the forum used much for creating campaign/advocacy work, except in the groups section, because people don't want to create their work in public.
    The group section can be handy for campaign/advocacy work, because it's private.
    The groups section works quite well for collaborative work, except that it does lack collaborative tools, but I don't know if that's a major problem.
    I set up my own google docs account for when I want to work collaboratively with someone. It's very easy to set up a google docs account, and it is nicely flexible, and it can be used alongside a forum discussion thread.

    I don't know if new collaborative tools would get used...
    Other people people might find them useful, but I don't think I would use them so much..
    But who knows what would happen if the facilities were available to use?

    Anyway, these are just my opinions.
    It will be interesting to see what others think.

    Thanks Jen.
    Sing likes this.
  15. JenB


    Bob, this is all super helpful. Thank you so much!

    I'm also curious to hear what others think...
  16. Graham

    Graham Senior Moment

    Sussex, UK
    It's a good idea Jen.

    OK, this is just from my own selfish point of view. It would be great if there was a comprehensive wiki on the history, the studies, the research, the theories, etc. with online links as far as possible. That would have saved me hours on our recent project. The content would have to work hard at being factual and neutral.

    As far as group projects, or individual pages are concerned, references to them could be made within the wiki, and the creators, who would be responsible for upkeep, would apply to have links to them included.

    On more "emotive" issues, again, I think this could be possible if it were under the same conditions as the group projects – applying for links to be included.

    As I hate talking in general terms, let's link it to our recent PACE project. The core wiki would have links to all the works that we referenced, including the PACE project, together with structured text where appropriate giving an overview. So, for example, links to the PACE trial could go with all the other links to CBT GET trials together with a general, cool, factual description. That is a massive task, but Bob's historical me wiki is the sort of thing I have in mind.

    I could then apply for our PACE project to be included in perhaps a subsection of the above, under "reactions to" these studies.

    There could also be a link to the long PACE discussion thread on PR, or to other reactions, provided that they measured up to whatever standards you felt were necessary. The difficulty comes when a criticism turns into an out-and-out attack, and it will be so hard to decide where to draw the line. It might be appropriate to allow links to all of them, on both sides, but have some sort of grouping label for such things (critical, severely critical, supportive, etc.)

    Last comment (Phew!). I don't think my ideas are the solution. My attitude is that if I float my ideas, such as they are, that may stimulate better versions. I'd like to be a catalyst when I grow up, making things around me speed up and do all the work, while remaining pretty much unchanged myself in the process.
  17. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    I don't think we need to concern ourselves with a wiki to actually organize collaborative projects, though I could be wrong. In these cases we might well want to keep them private until they are ready to go - and at that point they might well be connected to the wiki.

    Privacy is a huge concern in collaborative projects - aside from something like writing a wiki which is also a collaborative project but is always a work in progress.

    This does not mean that a wiki cannot be used to assist collaborative projects. Important but public information could be linked to the wiki and everyone in a collaboration could use it.
    Sing likes this.
  18. Sing

    Sing Senior Member

    New England
    JenB, I agree with your view here: "I think maybe a single wiki that is a reference guide/encyclopedia might be all that's warranted." I know this followed an "if".
    But--I am following an 'if 'with its typical 'but'--once this reference guide is set up and running, if there appears to be the need for further software for group projects, then perhaps the wiki forum or google docs, or other means seems most helpful, can be added. So, start with one, and add the other later on, if needed.

    This will be a good resource for us and the public at large. Thank you!
  19. biophile

    biophile Places I'd rather be.

    Keeping track of numbered references in changing articles is very difficult. Whatever wiki software is used, I think it should be able to automatically list in order at the end of the article, the hidden reference data within inline citations during the article, like Wikipedia does (but doesn't need all the complex templates of Wikipedia, the "Cite" extension that comes with MediaWiki is good enough unless you want to start importing article text from Wikipedia without reformatting). Making your own basic templates is also, well, basic. Adding the infamous [citation needed] tag or anything else is very simple.

    MediaWiki is powerful but complicated, and I'm no expert on it, it may be overkill. I don't know if it can be integrated into the current PR member list (worse case scenario is we have to register for the wiki), but I do know that it wasn't designed for per page access restrictions and the hacks to do so are probably a security and/or functionality risk. However, during installation you can make it a private wiki requiring registeration to either view or edit or both, so there could be 2 wikis, one private and one public, and link the two?

    It has been suggested that the PR wiki will allow original research, unlike Wikipedia. This is good for a patient website, but it has also been asked what happens when people disagree. Wikipedia has policies and guidelines for article content and the behaviour of editors, so here at PR there could be a simple equivalent to that which is more relaxed. People will be more free to add different viewpoints in the same article, and if the different camps cannot agree to that then they can have their own article fork without having the sort of curmudgeonly censorship that occurs at Wikipedia (attempt a ME content fork and see what happens!).

    On the issue of ownership, you could have all the community articles in the main namespace, but you can also have "personal" articles and establish an etiquette where that user essentially owns it. For example, the URL for the main public CFS article would be [PR]/wiki/CFS whereas JenB for example could have their own version ie [PR]/wiki/User:JenB/CFS. Hope that helps!
  20. Sasha

    Sasha Fine, thank you

    I'm not really familiar with wikis so don't have much to contribute to the discussion but I think we would need some kind of "troll defense". We've had troll issues in the past - what's to stop someone destructive just coming in and editing an article so that it's offensive, or distorts the facts?

    I'm sure other wiki projects have had to address that and maybe already have some good solutions.
    Sing likes this.

See more popular forum discussions.

Share This Page