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Biomedical articles on MEpedia - purposes and pitfalls

Discussion in 'MEpedia' started by Jonathan Edwards, Aug 10, 2018.

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  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Last edited: Jul 17, 2019
  2. Trish

    Trish Moderator Staff Member

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    It looks like there is a problem with oversight of MEPedia. It seems from those tweets that Jen Brea, having been part of the team that created MEAction and MEPedia, which I understand is an MEAction project, is dictating the direction.

    @JaimeS, am I correct that part of your job with MEAction is to oversee the science sections of MEPedia? Is there a management group that sets policy on MEPedia? I don't understand Jen B's dismissive response to Michiel Tack in these tweets.
     
  3. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    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.
     
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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.
     
  5. JemPD

    JemPD Senior Member (Voting Rights)

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    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.
     
  6. Estherbot

    Estherbot Senior Member (Voting Rights)

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    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.
     
    Last edited: Jul 19, 2019
  7. Estherbot

    Estherbot Senior Member (Voting Rights)

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    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.
     
  8. Andy

    Andy Committee Member (& Outreach when energy allows)

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

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    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
    _____________________________


    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.
     
    Last edited by a moderator: Nov 23, 2019
    Guest 2176 likes this.
  10. Trish

    Trish Moderator Staff Member

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    Yes, I think there is a problem with an advocacy organisation having a Wiki that includes scientific topics related to its area of advocacy in the form of a Wiki that allows open non-curated material, and where most of its contributors are not experts.
     
    Last edited: Nov 23, 2019
    InfiniteRubix and Sarah94 like this.
  11. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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

    Dx Revision Watch Senior Member (Voting Rights)

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    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.
     
    Last edited: Nov 23, 2019
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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.
     
  14. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    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.
     
  15. strategist

    strategist Senior Member (Voting Rights)

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    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
     
  16. Trish

    Trish Moderator Staff Member

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    The question surely is about what MEPedia is, not what it could be, but what it is. Yes, the ME community has people with relevant expertise, but are they willing and able to devote the considerable time and effort needed to moderating it and producing high quality accurate material?

    When a resource is being turned to by patients for medical information, I think the owners of that resource have a responsibility to ensure it is kept as up to date and scientifically accurate as possible. I'm not sure MEAction has, or should have, the resources to devote to that with all the other things MEAction does.

    I agree it's a useful resource on some things. For example historical information about people and ideas in the ME world, and links to things like diagnostic criteria, IOM reports etc.

    I think the mistake MEAction made was to expand it into biomedical research areas that are either not well researched or peripheral to ME. The selection of topics and research papers to include and the way summaries of that research are written can give a very distorted view of the quality of the research evidence and the relevance or otherwise of those topics to ME.

    Moderating such a jumble of scientific topics that may or may not be relevant to ME, and may or may not be supported by any good quality evidence would require a team of dedicated moderators not afraid to upset people with particular theories about ME by deleting or significantly modifying their articles.

    It reminds me a bit of the way politicians without a scientific background approach science. So often I have seen politicians deciding a policy on financial, ideological, or political grounds, then looking for any bits of science that support their view, regardless of quality, and using that to say they have evidence based policy.

    We see this in ME as well, though for different reasons. Individuals find their own ME improves or worsens after some particular event whether a trigger like an infection, or a treatment like a drug, nutrient, alternative therapy or surgery, and become enthusiastic promoters of theories built around that treatment. It is natural for those individuals to seek research evidence in support of their theory, and write articles for MEPedia that give a biased view based on the research, of whatever quality, that seems to uphold their view.

    Unless a team of moderators can see this bias happening and counter it with an unbiased editing policy, MEPedia is in real danger of becoming a collection of poorly evidenced unproven hypotheses propped up by inadequate or irrelevant research, masquerading as scientific articles.
     
  17. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    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?
     
    Michelle, InfiniteRubix and Trish like this.
  18. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    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.
     
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  19. Trish

    Trish Moderator Staff Member

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    At risk of dominating this conversation I will make one more point and then try to desist and leave the discussion to others.

    MEAction is a relatively new organisation, with commendable enthusiasm for taking on all aspects of ME advocacy. With limited resources, as all advocacy organisations have, I think one of the biggest decisions that needs to be made is what to focus their staff and volunteers' energy on, and what to leave for others to do.

    Dare I suggest that perhaps the science part of MEPedia is a step too far for MEAction at this time. If you don't have available experts, paid or unpaid, able to devote the time to pretty ruthlessly moderating MEPedia's biomedical science articles, it may be necessary to make a policy decision that this is not a priority, and therefore that side of MEPedia should be closed down. Better to provide no information than inaccurate information.

    We all want the best for people with ME. This concern is not specific to MEAction. I have been highly critical of some of Action for ME's materials, resulting, at least to some extent, in one document being withdrawn and another re-written. We need to be just as vigilant with all our ME organisations and the materials they produce, to protect our fellow patients from being misled.
     
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  20. Esther12

    Esther12 Senior Member (Voting Rights)

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    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?
     
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