Improving Wikipedia's references to ME/CFS

The page has changed hugely over the years 2004 = https://en.wikipedia.org/w/index.php?title=Chronic_fatigue_syndrome&oldid=2120001 2022 = https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome

I've watched the page fairly regularly since maybe 2006/7 including the talk pages and the various mediation dramas. From what I could see over all that time there was just a single individual whose behaviour was pathological and who did cause a lot of misery, apart from that the main protagonists were just going by the rules.

I'm afraid a lot of contributions from PwME were bound to fail because they were outside the rules and, while we know the cognitive challenges we have that make getting to grips with an arcane rule set is a major challenge, the rest of the world isn't that keen on making allowances, certainly not the intellectually driven WP aficionados. The key test for an edit to any WP medical page is whether it fits -
Wikipedia:Identifying reliable sources (medicine) https://en.wikipedia.org/wiki/Wikipedia:Identifying_reliable_sources_(medicine) which make it clear that:

"Primary sources should NOT normally be used as a basis for biomedical content. This is because primary biomedical literature is exploratory and often not reliable (any given primary source may be contradicted by another). Any text that relies on primary sources should usually have minimal weight, only describe conclusions made by the source, and describe these findings so clearly that any editor can check the sourcing without the need for specialist knowledge. Primary sources should never be cited in support of a conclusion that is not clearly made by the authors (see WP:Synthesis)."

Many of the arguments I saw between PwME and other editors were around the primary sources issue, where PwME wanted some favoured primary source included in the article when it was never going to make the grade the other editors expected. To some extent those unwinnable arguments probably made things more charged than they needed to be when dealing with the actual prejudicial stuff.

As far as the main article stands - I'm not sure about the sub articles, treatment etc, but to me it looks about as good as it could be within the rules, and that is a testament to a few hardy souls who have stuck at it for years. I don't think we should be denigrating WP participants when there's PwME or PwME supporters who have done very well for the cause of ME/CFS precisely by participating in WP.

 

Is anybody else here annoyed by the number of pay-walled references? Shouldn't knowledge be free?

 

It broadly makes sense that anything funded by research councils should be free to taxpayers in the relevant jurisdiction, and that seems to be the direction of travel, although there’s still an awkward question of who funds peer review processes if rapacious paywalled journals are cut out of the loop. And if everyone who pays for the paywalls is an institution, while everyone with a private interest uses Sci Hub, the market is probably more efficient than anything that will replace it.

 

I was happy to find an entry on Chris Ponting (DecodeME principal investigator).

https://en.wikipedia.org/wiki/Chris_Ponting

Just a minor thing but nevertheless annoying:

"Additionally, his lab is part of DecodeME, a genetic study to determine the potential causes of chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). [28][9] "

None of the references uses this wording, it's either "ME/CFS" or "myalgic encephalomyelitis (ME)".

 

It's down to WP's internal links - as WP has a page called "chronic fatigue syndrome" to have an accepted link to that page the format has to mirror the title. There's probably a way around it -
Wikipedia Disambiguation but not every editor has the skill to sort these tings out so they go with the flow.

Given the weight of references now being used on CFS page there might be grounds for seeking a name change https://en.wikipedia.org/wiki/Wikipedia:Article_titles#Considering_changes - but taking that forward would likely need time, effort and diplomacy.

English WP - which is actually American English WP is very USA centric and the fact that CFS has been in common use in the USA for a long time is likely to be an area of contention. Anyone with appropriate language familiarity might find less resistance on other WP language pages.

 

Off topic but a perhaps useful balance of perspective. PwME have a lot to feel aggrieved about re: the CFS page but it's worth remembering that WP is more than a single article and WP editors can at times do valuable work and face real danger because of it: A top Wikipedia editor has been arrested in Belarus

 

Back in 2019 I donated £10 to Wikimedia, they normally do good work but the ME/SEID articles have been awful in the past. SEID was soon vandalized after it's creation so that it redirects to CFS which was depicted as inconsequential hypochondria.

 

Graded exercise therapy

https://en.wikipedia.org/wiki/Graded_exercise_therapy

 

Chronic fatigue syndrome treatment

OK
this bit is problematic

The section on CBT has some good bits eg

that b. cochrane review again:
Graded exercise therapy

not heard this term used before;
Pragmatic rehabilitation

there is also a longish section on the PACE trial controversy.

(no mention of the recent NICE guidelines)

https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment

(I've added the page to Wayback)

 

treatment page has very low visit numbers: https://pageviews.wmcloud.org/?proj...t-20&pages=Chronic_fatigue_syndrome_treatment averaging less than 20 a day. Main article gets 1000+ https://pageviews.wmcloud.org/?proj...ange=latest-20&pages=Chronic_fatigue_syndrome

Clearly it's useful to have all the relevant WP pages of a good quality but also have a view on using limited resources.

 

Good to see that this has been edited:

"Additionally, his lab is part of DecodeME, a genetic study to determine the potential causes of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).[28][9]"

 

Thought this email that I received might be of interest (I assume I received it as my s4me email address was included in the DecodeME protocol paper).

"Have you ever wondered of having a Wikipedia page for yourself or your company? We can help you get a Wikipedia page for yourself or your brand.

Why have a Wikipedia page?

Google loves Wikipedia and as such ranks it high in search results. Wikipedia is also the first place people go when they Google your name. By leveraging Wikipedia, you can help control your Online Profile and present yourself to the world. Usually Wikipedia only accepts pages on celebrities and famous companies, if you are looking to get one for yourself, we can help you with that. Having a page for yourself in Wikipedia, brings you more credibility and makes you more famous.

We have been editing on Wikipedia for 9+ years and We've created tons of pages for companies, people, brands, products, and of course for academic purposes as well.

We own multiple accounts on Wikipedia with page curation and new page reviewer rights, so we can create and moderate pages with almost zero risk of another mod taking it down.

There are few Wikipedia editors who are willing to create a page for money, and most of them are scared to offer this service directly, so they do it through their trusted sellers who mark up the price to $1500 - $2500 per page.

Because you're buying directly from an experienced Wikipedia editor and mod, you'll get your page a lot cheaper, faster and with more reliability.

Let me know if you are interested."

 

Wikipedia:Notability

There's no guarantee that notability (person, organisation etc) will be accepted by the WP hive mind, it has also become harder to get new articles accepted: Wikipedia:Articles for creation The paid for editing market has been around almost as long as WP, and has involved lots of controversy, it is also of course pretty much legally unregulated as it's hard to get an enforceable contract even if you are dealing with an identified real world legal entity as the entity has no guarantee what will happen to an article long term - essentially there's a long term maintenance commitment which either means ongoing $s or someone volunteering to watch the page. The latter is no fun if you pick up a determined adversary, the paid for 'watching' sometimes looks like a protection racket.

Wikipedia: paid editing (guideline)

 

That's a scam - leave well alone.

 

new entry
https://en.wikipedia.org/wiki/File:Triggers_of_Post-exertional_malaise.svg

 

That is a file that has been uploaded and then used on this existing page, https://en.wikipedia.org/wiki/Post-exertional_malaise

 

Adapted from a published original: Fig 1. Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

https://www.s4me.info/threads/chara...ronic-fatigue-syndrome-2020-nath-et-al.16927/

 

I'm unclear about what people mean by emotional exertion, does the adrenaline cause PEM? I've never experienced it my self.

 

N=1 etc, but yes for me definitely any kind of over-stimulated, "adrenalised" (assuming that is what is happening) buzzing state causes severe PEM every time..