Why MEpedia is flawed and potentially harmful to advocacy

[JaimeS]

Hm, like eradication of smallpox. Isn't that considered evidence?

JES, I think that person was referring to the fact that there isn't good evidence for the fact that vaccinations cause or contribute to ME/CFS onset. @roller please correct me if I've misrepresented you.

What I'm getting overall is that we fear MEpedia is harmful to advocacy specifically because anyone can say whatever they like, so long as they cite it. Therefore, we are essentially criticizing a Wiki for being a Wiki -- people here feel that the content should be controlled, and removed if it doesn't suit the purposes of #MEAction as an organization, or the patient population as a whole.

What we are describing, then, is not a wiki in the traditional sense, but a managed, moderated space in which only certain content is allowed.

 

[JaimeS]

I don't mean to attack anyone personally, so please try not to take it that way. I also realize that, given that I don't spend energy on advocacy any more, it may feel a bit rich for me to offer criticism.

Thanks for being honest, @mfairma . I'm certainly not taking it as a personal attack.

On the one hand, I understand that not everybody has the energy to contribute to efforts like MEpedia, and that focus is a real problem for those with the illness. On the other hand, I think it's very easy to spot flaws from 'outside the game' as it were, but not do much about them rather than comment here.

I appreciate the outside perspective, AND at the same time, MEpedia would be much improved if those who could contribute once in awhile did so as a general rule.

 

[Esther12]

I do see that a potential problem with an MEpedia type project is that there are a lot of myths around ME/CFS and some patients can end up falling for them and promoting them. I don't know enough about MEpedia to know if that is a real problem there, or what to do about it.

From a quick look, it didn't seem that bad... certainly compared to some of the sites that were around 15 years ago. I'm sure it could be further improved though. Maybe it will be a case of taking it one article at a time, engaging in debate on them, and letting some sort of community standards grow out of those discussions and debates?

 

[alex3619]

The issues with evidence based medicine deserve their own thread. Its a deep and difficult issue. Evidence based medicine is a work in progress, just like MEpedia. EBM is deeply flawed. We need something like it, but we need it to work, not fail. I regard the PACE trial as yet more evidence that EBM, as it is currently practiced, can fail all too easily. I am a bigger fan of evidence based practice, EBP, than EBM.

 

[JaimeS]

I don't know enough about MEpedia to know if that is a real problem there, or what to do about it.

Look at MEpedia's pages: if you see a problem, fix it. If you are too tired, put a pin in it to fix later, or alert a friend to fix it.

Seriously, though, these conversations are important -- so long as something comes of them beyond conversation alone!

-J

 

[mfairma]

The problem isn't entirely with wikis; even Wikipedia has hierarchies. But, that said, the Wikipedia pages on CFS are bad for some of the same reasons MEPedia will struggle. Consensus on controversial issues is difficult to achieve, all the more if the process to get there is too democratic and if there are differences in skillsets and knowledge bases.

 

[MEPatient345]

Olliec is not the "owner" of MEPedia, so making pointed comments about content (like the one about dark chocolate) seems unhelpful. Olliec a volunteer giving time toward a community project, and trying hard to involve others, that's why he and i have posted here a couple of times asking for help with MEPedia. If you don't like it, change it. It's open source, as noted. It's just a digital tool, and a new one for ME that we didn't have before. Knowledge is buried in forums like this, not saved, cited and cross referenced like it is in a wiki . It will only become a valuable resource if people help out.

There are some sick patients who spend a huge portion of their bedridden, foggy-headed time per week doing things to help the community, at cost to themselves. Their efforts should be supported, not torn down. The title of this thread makes me sad and disappointed.

 

[JaimeS]

even Wikipedia has hierarchies

Not sure what you mean here. Definitely anybody can contribute to Wikipedia at any time. Do you mean that there is someone 'in charge' there? Probably in terms of site hosting and such, but not in the sense of 'in charge of what content is allowed there'...

 

[JaimeS]

Maybe it will be a case of taking it one article at a time

I think I missed this the first time I read it. That's a really amazing idea. We could have a thread started here on PR on a particular page that needs help. Someone could throw up a really rough draft or even just say "anyone have studies on...?" and people could comment. At the end of the week, we could gather the information and write the page!

OMG @Esther12 this is a really awesome idea! Let's do it! MEpedia would really benefit from the experience of people on PR.

And what a great way to contribute as a group while still ensuring that there is some form of community consensus!



-J

 

[worldbackwards]

Not sure what you mean here. Definitely anybody can contribute to Wikipedia at any time. Do you mean that there is someone 'in charge' there? Probably in terms of site hosting and such, but not in the sense of 'in charge of what content is allowed there'...

Try and post something "controversial" (true) about ME on wikipedia and see what happens.

 

[L.A. Cooper]

Lots of things going on at once here. Wonderful to have so many opinions on the matter!

This is a baby project, and given that fact, its vastness is highly impressive. But like any young venture, whether it be a business, an organisation, a lifestyle change, or, in this case, MEpedia, it takes time to build and elaborate until it reaches a point of complete satisfaction.

In addressing any kind of potential harm its doing to ME activism, I'm not sure I can see that side of it, unfortunately. There are an enormous amount of freelance writers out there (certainly in the UK, at any rate) who are becoming increasingly interested in ME and ME activism. Not taking into account the ME community itself, those from the "general public" who have no clue about what ME is, what it really is, the history behind it, the movements, research going towards it etc. etc. now have a central location where they can find so much information, and this will only continue to grow over the upcoming months and years.

There is, and always has been, massive divide in opinions regarding treatments and theories in cures and causes and that's fine! That's fine because, as we all know, what has worked for my neighbour has not worked for me. As a matter of fact, I have yet to find a single assistant drug that has helped in any way. But it does not mean that those I have tried and found unsuccessful I would deem a black hole of hopelessness, that is what I would call harmful. Including a page on one treatment does not mean we, as a minority or a majority must push it further, agree with it or disagree with it. It's there. It's just there. It's information.

As someone who was very sheltered from a lot going on in this community for a long time, MEpedia has become somewhere where I can educate myself to be a better activist, and also to take better care of myself on a personal scale. And I'm far from alone in that sentiment.

Of course, bringing back my point from before about the newness of MEpedia, it would take much less time to reach something close to finalised if everyone took 10 minutes to make small edits whenever they can. Whenever they can. That's the beauty of having a wide platform; everyone can tag along to the party!

 

[JaimeS]

Try and post something "controversial" (true) about ME on wikipedia and see what happens.

Ahhh. But gotta say, I don't think that's 'management' doing the work, but people who have previously contributed to that page.

 

[sarah darwins]

OMG @Esther12 this is a really awesome idea! Let's do it! MEpedia would really benefit from the experience of people on PR.

And what a great way to contribute as a group while still ensuring that there is some form of community consensus!

That really is a great idea. What a brilliant way to harness the thoughts of a range of informed but illness-limited people and refine them into a positive contribution to the sum of human knowledge. And it brings an extra degree of transparency to the Wiki concept, which is how it should be. Nice work, Esther + Jaime.

 

[L.A. Cooper]

I think I missed this the first time I read it. That's a really amazing idea. We could have a thread started here on PR on a particular page that needs help. Someone could throw up a really rough draft or even just say "anyone have studies on...?" and people could comment. At the end of the week, we could gather the information and write the page!

OMG @Esther12 this is a really awesome idea! Let's do it! MEpedia would really benefit from the experience of people on PR.

And what a great way to contribute as a group while still ensuring that there is some form of community consensus!



-J

Yes! This is exactly my thought pattern. We could host edit-athons for a space of 3 or 4 hours, anyone can jump in and join the party for however long they can, even if it's only a few minutes. Bring your own booze though...

 

[worldbackwards]

Ahhh. But gotta say, I don't think that's 'management' doing the work, but people who have previously contributed to that page.

I agree, but whilst all contributors are equal, some are more equal than others.

 

[JaimeS]

Thanks again @Esther12 and ty, @sarah darwins !

So, everyone, starting on Mondays, I will post about a page that needs some help. I will invite everyone to direct me to useful studies and summaries that can help us better understand a topic. Anyone who wants to jump in to improve MEpedia can do so, or they can simply post stuff in the thread if they're concerned about how to edit (tho it's easy, I swear!)

I think we have some general misunderstandings about wanting someone to be 'in charge' of MEpedia (which I'm not) or even someone to be the head of deciding what goes up next (which I'm also not) or someone to guide content (which I am -- again -- not!). But that points to a deeper concern of wanting to be sure that MEpedia really represents the ideas of the community.

I think by inviting people to participate together, we can address those concerns while making MEpedia an even more useful tool for patients and the public.

If you came here to help, please join me this coming Monday. I have always been so grateful for the science expertise in particular here on PR. Let's build MEpedia together!

BTW, will not respond further unless you tag me -- easy to get sucked into convos like these and be lost for hours... especially when I feel strongly.

-J

 

[Esther12]

Best wishes to everyone working on this. It does sound like a worthwhile project, and something that could be a good jumping on spot for people new to advocacy who might feel a bit unsure about where they stand on things. Discussing and debating matters with others can be really helpful for working out what one thinks about an issue.

 

[A.B.]

Does MEPedia have rules on what content should be included?

Is there some minimum "inclusion threshold" a topic must meet in order to have its own page?

Both of these are necessary for a healthy project.

 

[A.B.]

@Jonathan Edwards I'm sorry to drag you into this, but I think it's important that a doctor gives his opinion on this matter. Do you think that the current approach may be harmful to the image of patients?

 

[Yogi]

I think MEPedia is a terrific idea. I think the title of this is a bit strong but obviously the original poster is entitled to express his/her view.

I am not feeling great to leave a such a large comment but it must be remembered that MEPedia is in its infancy and is a wiki open source and it will evolve and take time to grow. The more evidence based topics will outnumber and outweigh others in due course.

It is good that some evidence based supplements are included as they help some people (and i understand not others). Perhaps the section should be called "potential symptomatic relief/treatments" or require it to click through so they are all not named on the homepage to prevent more conservative medics etc not being put off by all of them on the homepage?

Thanks to @olliec and @JaimeS and @L.A. Cooper and everyone at MEAction for providing this wonderful resource which i know is a great asset to the community and will get better as time goes on.