slysaint
Senior Member
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Just found out about MEActions idea to set up MEpedia. Not quite sure how it'll work. Thought someone would have posted about it here............?
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
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.
https://www.facebook.com/mepedia/posts/788593207944981 links to the post on the MEpedia Facebook page.The MEpedia projects needs a volunteer who is a regular on Phoenix Rising to help work out how best the two can work together, can you help? Or do you have ideas about PR and MEpedia can work more closely?
AYME Functional Ability ScaleGot an example @slysaint ? If it's a case of information on MEpedia that is now incorrect, that will take as long as it takes for an editor to get around to updating it, and as far as I know they are all patient volunteers.
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.
Well that one is now fixedAYME Functional Ability Scale
http://me-pedia.org/wiki/AYME_Functional_Ability_Scale
this is an example; I imagine there are more(?)
Maybe when you know how!It's easy to edit stuff, you just have to sign up.