Improving Wikipedia's references to ME/CFS

Thanks - I was confusing the CFS page with the CBT page. Looks like that refence hits the "systematic review" sink hole that can scupper change to WP med articles. It's not an actively edited article so maybe a fossil that could be removed without contention. Only question is whether it would start rear guard action on the main CFS article - letting sleeping dogs lie etc.

 

Asked a friend - lets see what happens.

 

Some activity on the CBT page - looks like removal was opposed but addition of CDC and NICE refs accepted, at least for now. Probably depends on which Wiki janitor is claiming territory.

 

In sorting through some paperwork I discovered that in 2006 I printed out Wikipedia's CFS page. Would I assume correctly that there will be some people here who are interested in seeing how it looked? If so, I will get around to scanning it in and uploading it.

 

Not sure this is necessary -- you can view wikipedia pages' history (tab 'view history') and filter by date, e.g.:

https://en.wikipedia.org/w/index.php?title=Chronic_fatigue_syndrome&diff=97338043&oldid=97308420

(scroll down to view the historic page.)

 

Ah, OK, thanks for pointing that out - I won't bother with it then.

 

Some changes on the main Wikipedia Chronic fatigue syndrome page:
https://en.wikipedia.org/w/index.php?title=Chronic_fatigue_syndrome&oldid=1065946754

 

Just noting the name of the editor in the recent updates - some heroic fortitude by that editor and one or two others over at least a decade !!! to bring some accuracy to the article in the face of at times hostile opposition, on top of course dealing with the mind rending Wikipedia rules.

Wikipedia etiquette doesn't approve of discussion away from Wikipedia which can look like people conspiring to change articles illegitimately, so making a big deal out of a named editor's work can cause them problems, however anyone can open the view history tab on the article page and give a public thank you for each edit - appears on the right of each item in the history list.

 

Just looked and the edit to the CBT page seems to have stuck.

 

https://twitter.com/user/status/1495157723066949636

 

I thought Heilman always seemed more like a 'follower' than someone like Jameson/sciencewatcher, Guy Chapman, or some of the others. Still lots of examples of troubling stuff from him, but wikipedia's rules are often a bit shit and encourage a lazy deference to authority, and I think it's unfair to say he was suppressing biomedical evidence - that could be the least accurate way of describing the problem with the way he approached ME/CFS.

 

I'd be intrigued to know more on the exactly policy/process re: 'one has to build up a consistent bank of meaningful edits'. The whole point of wikipedia being that it is democratic, would infer that one or two individuals continually editing back to the same thing what could be hundreds of different individuals' edits should be something they flag and ban rather than favour? Otherwise they might as well put the individual's name at the top of that page?

 

I'm not sure about the 'democratic' bit - maybe it says that somewhere in the WP spiel. The key thing about WP is that it is a rules based system - and it was developed 'democratically' by people who were obsessed by rules and as such it has more in common with a role playing game (RPG) than a community project or scientific endeavour (in joke gamer ref - Wikipedia is Lawful Evil). As such it is not unfair to describe WP as an MMORPG - massively multiplayer online role-playing game . However that doesn't mean every contact in the WP world is about points scoring - it just means that there are some WP players whose only interest is in points scoring.

My experience of WP was a decade and more ago dealing with a couple of non ME related subjects - from which I would say that WP is a mix of all sorts of people, just with a high ratio of obsessives, gamers, fan bois, PR grifters and twats; despite that it is possible, with patience, to make progress even in contentious areas - but you gotta know the rules.

The point about "bank of meaningful edits" is I think overstated, it is true that your edit history can help or hinder if you get into arguments over content but in the main if you abide by the rules (all of them !!) and you are evidently seeking to improve an article, the amount of edits you've made isn't that important.

 

Gosh - I can believe all of that. Gives even more insight into the types who are determined to influence our destiny so to speak. Some must spend more time on it than their dayjob?

 

Wikipedia is largely dominated by a few power users who make most of the major edits and gatekeep the minor ones. You know, a small vocal minority. Like a board of directors or a legislature, or literally any social construct, there is always only a small minority of heavily involved people.

Which makes the trope of blaming us on this especially absurd. Not that they are made, but that people actually pretend this is a legitimate argument suggesting something nefarious. Especially coming from a small, vocal minority of physicians, with the rest at best silent bystanders.

But then again we are in a space where being activists for a disease is a bad thing, somehow, so it's not as if reality actually matters.

 

I've just noticed that a reference the article cites for prevalence (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7038594/) uses the flawed CDC 1994 criteria which they say gives a prevalence of 2.6% which is orders of magnitude too high for ME. UK Population is 67.22 million, 2.6% of which equates to 1,747,720 patients. Even the 0.2% figure which I've seen cited elsewhere is too high in my opinion.

To be fair, the article does mention that prevalence varies with different criteria.

 

To put it crudely, we learn about this tendency (of bad actors to try and pretend 'it was the other way around' or to point the blame at someone else to distract) in human nature early on with the 'whoever smelt it dealt it' phrase. If only we'd all evolved rather than devolved due to being jaded

As others also point out it seems that obsession for it in this case was the route to power. I'm sure there is a model (like game theory) which this rising to power user in WP is textbook represented by. I can half see the incentive at first, and imagine that once you have that control you don't want to lose it. But more 'purely' how much time are these few guys who are actually doing this to the ME WP page spending to keep it 'as is' and what do we think they are actually literally gaining from it in return?

 

Indeed - and to sound naive as I say this (I know) then one could say that if it were an experiment in how an information base maintained theoretically by 'the masses' could self-regulate and thereby become the best collection of both official and colloquial/informal information on a subject it is due an analysis + conclusion on that one.

Sounds like either they are too scared to do that, or as you say that was a nice line but it was always a different kind of 'game' and 'objective'. I just note how often google et al refresh their algorithms in order to reduce 'being played' and try and ensure that the aims of them are best met by the criteria as big players etc 'learn'. And yet it seems there has been no refresh or tweaking of these power structures etc for wiki. I mean it is fascinating and I expect is studied in various courses as examples of how over time things evolve under certain conditions..

But.. even I'm struggling to think what I think of WP and what I see it as now (without parroting lines relating to 'don't use it as a reference in your coursework' etc), and therefore what it's influence is. I mostly use it if I need to work out the name of that person on TV 'who was in something else I watched a while back' etc. But have also looked up more scientific stuff in the hope of it somehow being more easily explained (it normally isn't and I'd generally get the sense I'd need to cross compare if things didn't add up between it and official sources).

I wonder how on earth even WP (or other experts who might care enough to do the big surveys) cuold work out how much it is used by people, for what and whether/when they eblieve what is in it etc. Gut feeling says I have more issues with the NHS stuff - but probably because it backs up this kind of stuff, ie it is the cumulation of bad info that is the problem?