Biomedical articles on MEpedia - purposes and pitfalls

from the above thread posted by @mango
https://twitter.com/user/status/1151248412995661824


eta: have the 'core principles' changed?
https://www.me-pedia.org/wiki/MEpedia:About

eta: this page was edited in April 2019 anyone have an archived one from earlier on.

 

It's a shame because the platform seems like a really useful tool to collect reliable information and set the record straight on ME/CFS. It's for example really easy to add references, upload documents, and because it's open-source anyone can help out with collecting information.

 

My understanding of what is relevant to our community has changed in part through conversations with *thousands* of patients wrestling with these comorbidities.

The problem is that these people may be wrestling with disinformation provided originally by physicians and therapists and now by MEpedia.

I don't actually think the core principles have changed that much. I felt there was a problem right at the start. The first principle is emphasis on evidence - but it seems that all 'evidence' is treated equally. Wikipedia has its faults but at least it attempts to sort grain from chaff.

 

And that really concerns me, since this is exactly what we are fighting against with NICE/NHS/BPS fan club.
It seems counter productive for PwME to be doing the same, but just with 'evidence' that they/we favour.
Not to mention hypocritical.

 

A current problem is Jen Brea is trying to force a link between ME/CFS and CCI and using MEpedia and MEAction for this purpose.

There are lots on exciting research projects going on and I'm worried that time & money could be wasted on something which is tenuous at best.

 

I was a contributor for a while but stopped as I considered whether it was worth time & energy.

There were plenty of articles where individuals promoted a very subjective view instead of reporting the facts and linking to papers and articles where more detail was available.

 

https://www.meaction.net/2019/08/02/meaction-volunteers-of-the-month-mepedia-stalwarts/

 

Moderator note: This post has been copied and following posts copied or moved from this thread:
A proposal for ME Action: a commitment to evidence-based medicine
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I’m a bit baffled by the criticism of MEPedia. Is the general feeling that there should be no Wiki at all about this disease? All Wikis have the same strengths and weaknesses - because anyone can contribute to a Wiki of any kind, the information is usually considered a beginning place, not a final statement on any matter.

I find all Wikis useful in pointing me in a direction. ME-pedia certainly couldn’t exist at all if it were held to a higher standard than other Wikis.

 

I would strongly disagree, but I understand that you don’t want to divert the thread in that direction.

 

It's not just the scientific topics that are of concern. I found errors and misconceptions in pages relating to ICD coding. I would not rely on MEpedia myself and I could not be confident referring others to it or referencing MEpedia pages in my own reports.

Yes, there are problems with Wikipedia Admins tightly controlling the content and agenda of the CFS related pages. But many Wikipedia pages on medical/scientific topics are written by contributors with medical/scientific backgrounds.

 

I don't see the logic here @Wilhelmina Jenkins,

No, I don't think there is a feeling that there should be no Wiki but many if not most Wikis are moderated. Wikipedia is very heavily moderated. My London Bird Club Wiki for posting sightings of uncommon birds is moderated about every half an hour to ensure entries are up to standard.

I agree that Wikis have strengths and weaknesses but that simply means that you have to work hard to make the best of them and keep an eye out for unhelpful contributions. The principle of most Wikis is that anyone can contribute - which means you build up a big resource quickly - but contributions are thinned out when unhelpful.

The problem with saying that a Wiki is just a beginning, implying that people should then study more deeply, is that if an entry points people in the direction of misleading material then it is a beginning down a long road of misinformation.

I see absolutely no reason why MEPedia should not exist, held to a sufficiently high standard for the context, just like all other Wikis.

 

But Wikipedia itself is loaded with misleading information. It is usually corrected by the community of users. It was initially even more full of errors but, as it became more popular, those who run it were able to more closely moderate it. The same could be true for ME-pedia. We have a community full of knowledgeable people who can jump in and help.

I find most things on ME-pedia to be helpful. There are some huge omissions, but most of what I look for is easily found. No one should see it as the ultimate source of information, but for me, it’s a valuable resource.

 

The treatments section gives the impression there is a variety of treatments out there.

This can mislead patients into thinking they are missing out on some special treatment (given by specialists that have figured out how to treat ME/CFS).

https://me-pedia.org/wiki/Portal:Treatments

 

I didn't fully realize this and think it would be good for the MEpedia project as Trish explains.

I wonder how this normally goes: does Wikipedia have paid professionals that check the content that is being added?

 

Wikipedia has volunteer Admins who monitor pages and some specialities, for example, medicine, science, mathematics etc have editing groups that invite experts to review and generate content.

 

Personally, I find MEpedia to be a hugely valuable resource, especially for finding links/info that I'd forgotten the details of and I'm very grateful for the work others have put in that has made my life so much easier.

Having said that, I never look at any of the biomedical research areas so can't comment on this potential problems Trish (and others) raises about those pages. I can see how they could easily go wrong in a way that hurts the credibility of the wiki and misleads readers in dangerous ways. I can certainly see how over-enthusiastic proponents of a particular theory are likely to be the ones most committed to posting information in an area others might ignore.

To some extent, I'm not sure how high standards we can have for a patient wiki - misinformation is included in all wikis, and really users should be aware of that. I only use them as a way of finding other sources to check.

'Expert' oversight could also lead to the chosen experts just pushing their own misleading information? I'm afraid that I've been left with very little respect for the idea of turning to supposedly unbiased experts.

Would there be a way of tagging the tops of certain pages with something like: "At the moment their is no evidence proving a role for X as a cause/treatment/whatever for ME, and so mcuh of the following article is mere speculation." Would that be a relatively easy and useful change?