MEpedia

Hip

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Looks like a very worthwhile project. Seems that the MEpedia has already been set up, and already has some articles:

The MEpedia main index page is HERE, and just as it stands, is already a good tour de force of key terms, key people and key institutions in the ME/CFS world.

At this early stage, most of the articles that the main index page links to are stub articles (ie, just one or two lines of text long); but no doubt these will be expanded upon soon. Some articles, like the rituximab article and the PACE trial article are already quite substantial.



On the MEActions website, this article introduces the MEpedia, and explains is principles:
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.
 
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msf

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Hmm, I feel it may end up reflecting a particular view of ME. Let´s just hope it turns out that they were on the right path.
 

slysaint

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@Hip thanks for the links etc, haven't looked at it in depth but hopefully different ME groups will join in and give more varied/balanced view points (if they know about it). I don't know to what extent the organisers will censor any proposed entries....we will see.
 

JenB

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Hi all! I just happened to stumble across this thread. @msf I would love to understand better what you mean by reflecting a particular view of ME and what the "right path" means to you. I am curious what your concerns are about the point of view the original announcement implies.

We aim to be comprehensive - a complete reflection of the diversity and range of experience of this community. The full range of ideas. The full range of history, science, politics. It's meant to give patients, journalists, and I hope eventually scientists a deep and comprehensive view.

It's meant to be an encyclopedia, so it needs to stand on evidence, but we also have medical hypotheses pages that allow for more speculation and really any and all theories of the disease. We don't intend to censor - this is a crowdsourced project. What matters most is that the quality of the evidence (which will vary) is clear and that people can trust the information they read because it has been well-researched and cited.

We are also developing policies, style and organization everyday. Anyone can have a voice in that process. All you need to do is show up.

It will only be as good (and diverse) as its contributors so I heartily encourage all of you to jump in. I think it will be fun!

See: http://me-pedia.org/wiki/How_to_contribute and join our working group here: http://my.meaction.net/local_chapters/mepedia
 

msf

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Hi @JenB

Sorry, I should have been clearer - I wasn´t suggesting that MEpedia would (or should) have a psychosomatic bent, just that it might favour one physical explanation (autoimmunity say) over others (infection or autoinflammation). But if you are going to have medical hypothesis pages then hopefully all the arguments will be represented. Then it just comes down to how people view the evidence, which can vary quite a lot, but if anyone can contribute then all sides should be able to have their say.

I will contribute to one of the medical hypothesis pages when I feel up to it.
 

JenB

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That's great! Please do jump in. And if you don't see the page you are looking for and need any help getting started, just let us know.

Here are a few example of medical hypotheses pages that are better fleshed out:
http://me-pedia.org/wiki/Ken_Lassesen's_model
http://me-pedia.org/wiki/Omega_3_fatty_acid_hypothesis
http://me-pedia.org/wiki/Patricia_Kane_protocol

This one is not in the format of the others and need to be expanded: http://me-pedia.org/wiki/Vagus_nerve_hypothesis

I wrote most of the content on these pages and they represent totally different perspectives on the illness. The way I approach it is that I write on MEpedia about whatever I happen to be reading about at the time. It's now become my prosthetic brain so I have a place to go and read and find what I just learned and forgot (which happens all the time since developing this illness!) For me it's not really about having my say because I don't have strong opinions about what causes or cures this. I like reading everything and writing about everything. Little by little hopefully we will get to something that looks like a comprehensive treatment of our collective knowledge. What I am most excited about is the potential that through all of this interlinking (links within the wiki between pages) and by including basic science + research in other diseases, some of the hypotheses be experimental work will start to connect to each other in ways that we didn't anticipate or that are harder to see/explore through more linear ways of writing and thinking.

Anyway, jump in and let us know if we can help.
 

AndyPR

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Guiding the lifeboats to safer waters.

slysaint

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@JenB
Hi, I was just doing some Googling and have found that since AfME takeover of AYME any links take you to the AfME website.........but not to the information in the link. I was looking something up on MEpedia and the same thing happened. Anything you can do to fix this?
 

Joh

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It's easy to edit stuff, you just have to sign up.

From MEpedia:
Make a suggestion[edit]
Almost everyone working on MEpedia is sick, including bed-bound patients. Although we welcome suggestions please, please if you possibly can, create/edit the page yourself. It is very easy to add a new page or make an improvement - be bold! Together we are stronger as a community. If you REALLY can't edit the page, then you can go to the MEpedia suggestions page, click Edit, and add your suggestion to the list for someone else to consider implementing in future.