The MEpedia Primer for Journalists

Glad to hear that. I have also seen JamieS block a couple accounts that were blatantly spewing misinformation or promoting paid unproven programs, so there seems to be more moderation than one would initially be let on.

 

My opinion is that if the acronym ME/CFS is going to be used, which I personally favour, then it should be written as,
"ME/CFS
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), sometimes referred to as myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a serious and long-term illness.".

or if you wanted to keep the text in the first sentence as is then the heading should be "ME", not "ME/CFS".

I haven't looked, but does MEpedia state what naming conventions they use?

 

We have separate pages for Myalgic Encephalomyelitis, ME/CFS and Chronic Fatigue Syndrome as well as SEID. The convention is that the terminology used in an ME-pedia article should match the terminology used in the underlying source. Where there is a tension between the term used in the source and the definition (e.g., ME defined by the Oxford criteria or ME/CFS defined by the Canadian Consensus Criteria), it may be useful for clarity to mention the definition used.
​

https://me-pedia.org/wiki/MEpedia:Science_guidelines#A_note_on_ME_v._CFS

In my personal experience, the older articles tend to differenciate between ME and CFS while the newer articles tend to use “ME/CFS” or just “ME”.

 

If I recall correctly this is taken from the wikipedia page. I would personally put the PEM sentence in second place, to give more emphasis, and even consider bolding the ~pem is a hallmark symptom~ part, given how often PEM is ignored in news articles.

Also the shortening of orthostatic intolerance to “nausea or dizziness when standing or upright” is not very encompassing and feels slightly minimising.

 

I can see the argument for that being justifiable in relation to sources (though I'm not sure I necessarily agree), but there's no harm in recommending that journalists use ME/CFS in their own references to it even if their article includes direct quotes from a patient who uses ME or CFS.

 

there is a typo where it says it effects just 2 european citizens .

 

I think the Draft option is best. Maybe a note at the top of the real one that a new version is being worked on, with a link to it.

 

I looked and unlike wikipedia, me-pedia doesn’t seem to have a draft namespace…

 

That might not matter, I'm not totally sure. You can still just create an article named "Draft: Primer_for_journalists". I'm not sure how much actual difference having it be an official namespace has.

Edit: Lol I can't write "Draft: Primer" without a space because: Draftrimer.

 

Actually, maybe don't make a Draft page. It looks like regular users can't delete pages, so after the draft is done, there will be an extra draft page in the Main namespace floating around for who knows how long, showing up in places like stats and Random page.

 

Well I uhm just created it like literally a minute ago lmao

 

Oh lol okay I saw you add the note and hoped I could get to you before the page creation. Not a big deal. I did email the contact address for MEpedia yesterday to see if they can add a Draft namespace, we'll see if that works.

 

Since it’s created and we can’t delete it, might as well use it.

here is the link:
https://me-pedia.org/wiki/Draft:Primer_for_Journalists

I pasted @ME/CFS Skeptic ’s draft into it but otherwise it is pretty much blank.

I added this note at the top of the original.

Note: This page is slightly outdated, long, and slightly disordered. We are working on revamping it at draftrimer for Journalists.​

 

Thanks I'll try to add some references and improve the text if energy permits.

It would be good to have an example of a bad ME/CFS image and a good ME/CFS image clearly next to each other.

Perhaps also a section on severe ME and a section that explains core ME/CFS symptoms such as PEM, POTS, brain fog.

 

Is it my computer/internet or is MEpedia really slow to load?

 

It's often really slow for me on phone and computer, wifi and cellular.

 

One thing you can do when the draft page is done and its contents copied over, since deleting isn't an option, is moving it (renaming it) to a page in the User namespace. On Wikipedia, it's common to have subpages on the userspace that are less polished or not super related to Wikipedia, that use a format like:

User:BuilderBob/Drafts/Fibromyalgia

If the user is BuilderBob.

 

It's too buggy for me. Had multiple times where it crashed when I tried to save changes. It's also so slow that editing takes 5-10x more time to do than in other programs.

 

I swear this is new of the past few days. It used to work well if I recall correctly…