Why MEpedia is flawed and potentially harmful to advocacy

[MEPatient345]

Both AB and Valentijn are referring to a post I made asking for help editing 2 primers on MEPedia a few weeks ago that seems to have been vastly misinterpreted. MEPedia is not being used as the website to explain ME, or getting "huge exposure" or being "advertised". That would be a bad solution for millionsmissing.. We are developing a very visual public facing Millionsmissing website which will contain light information on the disease. It's not focused on science or research. It's about millionsmissing. I am excited about it, and I hope you all will be too.

There are a few links to 2 primers on a secondary page for people who want more detail. I chose them because those primers are quite complete. When I posted asking for help, I also thought that with 3 months out (and a group here who were raring at the bit to create a primer type page) that we would make more progress on MEPedia especially on the pages we link to. The primers are not about specific treatments.

MEPedia is not targeted at any particular audience, it is just information on ME in a wiki form. But the primers are for each audience (doctors, public, journalists, patients).

 

[Hutan]

Really the issues in this thread come down to who MEpedia is intended to be targeted at.

Yep, that is the key question. I very much like the idea of MEpedia as a way of collating and then easily accessing various useful bits of research and other documents. I think I don't like the idea of it being a direct source for advocacy.

Perhaps for advocacy it is better to direct people to, for example, the IACFSME website
iacfsme.org/. That has the benefit of sounding credible and, I think, the resources have had the oversight of experienced clinicians. If the primers and other resources there are unsuitable for some reason, perhaps input can be given to the IACFSME?

 

[Kati]

I wonder how many views MEpedia has on a daily basis, how many are new visitors and how many come from universities or public institutions? Stats counter is a good way to find out these.

I also echo previous posters and wonder who is the target audience for this MEpedia.

 

[Groggy Doggy]

Since much of the consensus is that ME/CFS is a psychosomatic condition, that is the view you are obliged to represent.

Is this just in the UK (consensus is that ME/CFS is psychosomatic) or is this a global view of the illness?

 

[Jonathan Edwards]

I think we can all agree that the moderating policy for Wikipedia is not ideal. They want to avoid personal opinions to insist that only published opinions can be quoted. Wikipedia wants to reflect the common ground of opinion, not the contributor. But of course that prevents the sensible sceptical contributor from pointing out that the common ground is ill founded. The point I originally wanted to make is that some form of moderation has been found to be essential and an ME media needs at least as firm moderation as Wikipedia, but probably a more intelligent one.

People are asking who MEpedia is for. My feeling is that it would be helpful both for patients and medical clinicians and researchers to have a repository of information that was of high quality, comprehensive and well validated. One of the most important functions, which relates to the politics of advocacy, as I see it is to show that patients can do better than the doctors when it comes to establishing the real knowledge base. It would not be that hard since the doctors are making a mess of things. And part of the problem is doctors trying a bit of this and that and reporting their opinion about their results as if it were research. That applies equally to PACE and anti-vitals as I see it. Patients need to be telling the medics that this sort of try it and see approach is not how you get reliable answers. So having a lot of 'what we tried and what we thought of it' is pointing in the wrong direction. That may sound very austere, but I think otherwise you have a mass of stuff that nobody knows what to make of.

 

[Groggy Doggy]

My feeling is that it would be helpful both for patients and medical clinicians and researchers to have a repository of information that was of high quality, comprehensive and well validated.

I agree. IMO our most pressing issue is that "hands on" doctors treating ME the patients (office) and researchers (in the lab) are not working together. And there is too much of reinventing the wheel and not invented here. We need repurposed meds to go into phase 2 trials, which will allow us to gain affordable treatments. But the cooperation is just not there. I don't think wiki is the place to start this transition, but it definately needs to happens on a platform. My doctor has 3 repurposed meds, that he wants to go to trial with, but his small office and staff can't accomodate it. He doesn't have a big name like Stanford to impress Big Pharm. This makes me wonder how many other doctors have solutions that we are unaware of. ME may already be solved, and we are blindly unaware.

 

[A.B.]

Agreed that collaboration and exchange of ideas would be very useful for patients, doctors and researchers.

To some degree this has already happened here on the forum, and it would be a good idea to encourage this further.

Vicky Whittemore mentioned that ME/CFS is special in there being a high proportion of privately funded research, and doctors that privately treat patients. This is probably the result of government failure to appropriately respond to the problem. I would love for her to be here on the forums for a talk on this topic. The words leadership vacuum come to mind.

I wonder if there is a case to be made for a NIH project that attempt to collect and organize the information that is already out there? Patients and doctors treating patients have a lot to say. It could be viewed as greater patient and doctor involvement in research which should be viewed as a good thing by most.

 

[barbc56]

After reading several pages of MEpedia, I already see many bits of information that could become quite contentious and end up with a wicki war where constant back and forth editing becomes the battlefield as one perspective is felt to be better than the other. This can even happen with theories backed by science but are interpreted differently.

On the other hand, do we avoid the whole thing simply because there a possibility of contention when it hasn't been given a fair change?

How do you set this up without having this happen? How do other information sources with the same format resolve these issues? How tight of a structure is needed to acomplish these goals? Is it simply inherent with these formats that it's simply part of the process and to expect to happen. Kind of like growing pains. You learn from the experience so just avoiding it may be counterproductive.

I'm getting two messages here. One is that in the "spirit of community" anyone can post without judgement about the content. I may be misinterpreting this but if what I'm thinking is correct, it means we bend over backwards to make everything fair. I think this can be overvalued to a certain extent in some situations. In some ways it's ingrained in us and understandable that we want to be fair and give everyone a chance to voice their opiniom. The comedian. The comedian Dara O'briain uses the example of an interview with an astronomer and then turns and says, now lets here it from the other side, an astrologist.

The other message I'm getting is thar we only want knowledge that has rigorous scientific evidence behind it.

While the above is an extreme example, my point is are these two perspectives even compatible? It sounds like we are talking about two types of sources of information being written. Maybe one of patients experiences and the other treatments, the science and implications behind it.

I'm asking many questions but don't know how relevent they are.Maybe just food for thought?

 

[barbc56]

I wonder if there is a case to be made for a NIH project that attempt to collect and organize the information that is already out there? Patients and doctors treating patients have a lot to say. It could be viewed as greater patient and doctor involvement in research which should be viewed as a good thing by most.

Would this information be in the IOM report?

 

[MEPatient345]

I think that this whole debate got going because in the spirit of transparency and collaboration, I mentioned MEPedia primers being used in a campaign that will reach the public. I chose the primers because they are general and cited information on the disease, the best I've found out there right now, and in a forum that is accessible to anyone here to contribute to within the MEPedia guidelines, allowing for a collaborative process. Hopefully they will be even better by launch. (Choices that I make in design also will get reviewed by a millions missing committee of patient advocates as we develop materials, and may change if there is a better option). So, to me, MEPedia is already proving its value as its has supplied these primers.

I think there's a lot of misunderstanding about the use case of wikis. When one finds a Wikipedia entry, one rarely visits the Wikipedia home page. (If you do, you don't judge the world as represented by Wikipedia based on that homepage.) You read what you are looking and move on. If you click through to another entry which is incomplete, as a user experience -- it is not a bad one. It is just the paradigm of a wiki being a work in progress. This paradigm is almost universally understood thanks to the ubiquity of Wikipedia in search results. As a user experience designer, I rely on already understood experience design concepts like this. So, that is why I chose these primers without concern for the fact that some of MEPedia is incomplete. They stand on their own. (Plus, MEPedia does have guidelines, objectives, citations and principles listed.)

MEPedia exists. It is not going away, and the people who think it has merit and value will continue to work on it. The people who don't, won't. You can't stop the Internet. Of course, things have growing pains, as @barbc56 says. A lot of really good points and concerns were brought up here and will be used and referenced by MEPedia editors to make it better. The editors have been asking for help and input from PR all along. This whole conversation is really valuable, and hopefully is just the beginning.

 

[Valentijn]

MEPedia exists. It is not going away, and the people who think it has merit and value will continue to work on it. The people who don't, won't. You can't stop the Internet.

No one wants it to go away. Some of us just want a clearer structure in place to handle disputes and promote science over anecdote and implausible treatments. As one of those people, I'm not willing to get (more) involved until there is some sort of structure in place, or at least the expressed will to make one.

So yes, it will exist. But if you want more involvement, and people putting serious effort into analyzing the research used to inform the content of the pages, some assurances against wiki wars and endless disagreements would help a lot. As would a clear indication to be striving toward high-quality content, rather than a massive quantity of low-quality content.

A lot of really good points and concerns were brought up here and will be used and referenced by MEPedia editors to make it better.

That's good to hear, because many of the earlier responses seemed to indicate that everything is completely fine the way it is

 

[MEPatient345]

@Valentijn We must be reading a different thread. All of my responses have been an effort to separate out the conversation about the function of a wiki from the content (that is incomplete).

I'm just trying to get to the bottom of where the fears came from about it, and apparently I initiated all this with a post. So, I'm trying to help resolve that. I would have gladly answered questions in the initial thread, but no one responded to it. When I talk about MEPedia, I'm just giving a perspective of a Person Who Uses the Internet, and a millionsmissing volunteer. Not an employee of MEAction or an editor of MEPedia (neither of which I am). I did ask for help with it -- because I think it needs help and I think it has great potential to be useful, and I thought and still hope we can use the primers. That's all.

 

[Snow Leopard]

The problem is that procedural changes are needed. Making all the edits in the world to improve content is pointless if a disagreement results, and blows up. Without clear guidelines in place, it's pretty much guaranteed that attempting to improve content will result in bitter disagreements, and there is no apparent system for solving those disagreements.

Yes, it is clear that MEPedia needs to step up to the next stage - some guidelines of quality (including disclaimers about medical advice and weak or non-evidence based treatments), along with some more active moderation.

This thread can be a starting point of the concerns that people have and the needs to be met.

But none of this is going to happen without more people being involved and some signs of leadership.

 

[Skippa]

And this is before it actually does go public and the trolls begin to make edits, every page "it's all in your head".

Defo need some stronger moderation at that point.

 

[Hip]

The point I originally wanted to make is that some form of moderation has been found to be essential and an ME media needs at least as firm moderation as Wikipedia, but probably a more intelligent one.

Perhaps this is the issue we could focus on a bit more in this thread: ideas about what type of moderation policy might be best suited to MEpedia.

I don't think the discussion in this thread should be framed as harsh criticism of MEpedia, in the way it has been. I think MEpedia is a really great project, and I think its contributors are all to be applauded.

So rather than criticism, perhaps it might be useful to throw a few ideas around about how MEpedia might start evolving a moderation policy in the future, if it chooses to do so.



As a starting point, although it is a different and much less ambitious project than MEpedia, let me briefly mention the moderation policy I use for my own roadmap of chronic fatigue syndrome treatment document.

The roadmap is primarily focused on helping ME/CFS patients (especially new patients) find treatments that might just help improve their ME/CFS symptoms a bit. There is nothing original on the roadmap; it's really just a condensed version of all the info I found on this forum and other ME/CFS blogs and forums. The idea is of the roadmap is simply to shorten the learning curve about ME/CFS, and the ME/CFS treatments possibly worth trying — a learning curve that originally took me many years of reading PR and other resources to climb.

The moderation policy I use for the roadmap is that every treatment included in the roadmap should either backed up by at least one study, or the treatment should be employed by several ME/CFS doctors. On rare occasions, I will sometimes break my own moderation policy, but by and large, that's the policy I use.

Of course, you could use a stricter policy, where for example MEpedia would only include treatments that have proved efficacious in stage III clinical trials, but at present that would mean including no treatments whatsoever.



I think it has to be recognized that ME/CFS treatment at present is more like alchemy than chemistry. It's lots of doctors and researchers fumbling around with partial theories and experimental treatments that may have some efficacy in some patients. Of course, we want to promote the transition from alchemy to chemistry as fast as possible, and in this respect, it would help if the format of MEpedia is evidence-based.

But it cannot be denied that fumbling around with "ME/CFS alchemy" does sometimes yield useful results for some patients, in improving their symptoms. I can certainly testify to this, as can many others on this forum. So personally, I would not like to see an MEpedia that has removed all these potentially useful treatments.

But one could also take a different view to mine, and say that there are enough places online (such as the PR forum) where playing around with "ME/CFS alchemy" takes place, so MEpedia could drop the "alchemy." But I guess those decisions are for the leaders of the MEpedia project to decide.


Now, where's that bit of base metal that I have been trying to transform into gold.

 

[JenB]

90% of the content on MEpedia is written by two people. When I first wanted to launch this project four years ago, I was greeted with such deep skepticism by a few members of PR, that I abandoned the project. The irony is that it is only because I encountered PR that I believed MEpedia was possible. PR contains probably all of the content that we could possibly want to have on MEpedia, albeit in an unstructured and difficult to sort through way (which is fine – it's a discussion forum which serves a different purpose than a database, which is what MEpedia is). If everyone in our community decided this was worth it and invested in taking the content we are already posting on PR, or are Tweeting, or are sharing on Facebook all of the time and added 2% on top of that energy to just post a sentence, a link on MEpedia, it would, with time, be incredible.

It's also really important to point out that no pages are just written all at once. So much of what is there and is "terrible" is just me dropping links on relevant pages whenever I see them and writing a sentence or two. So almost any page you go to is going to be problematic because we are still in this early phase of just trying to get the information onto the right pages in the hope that someone else will come along one day, sit down, look at all the information that's been pre-gathered for them, and really think and write the page. There are a handful of pages where that has happened, but don't be angry at the pages that are still in very very rough draft mode. Add to them, improve them, write them, make them.

@Snow Leopard , as far as "stepping up our game," there is a disclaimer on every single page that this is not medical advice. That's the best we can do. We cannot give specific disclaimers on specific pieces of content because it would turn MEpedia into an editorial, POV project, which we are not. And having a huge infrastructure of moderation for a project that is essentially kept alive by a tiny number of people also doesn't make sense, either. We're just not there yet. I hope we will be someday. MEpedia has had some incredible leadership. What we need is a sense of ownership. But I don't know precisely how that happens. There has been so much fear here about this project, from entirely different directions (it's going to be too broad! it will be too narrow! it will be too controlled! it will surrender itself to the masses!) It is whatever we make it, truly.

 

[Valentijn]

@JenB - So basically, nothing is going to change with regards to having a system in place to ensure quality content and settle disputes that arise?

 

[Hip]

If everyone in our community decided this was worth it and invested in taking the content we are already posting on PR, or are Tweeting, or are sharing on Facebook _all of the time_ and added 2% on top of that energy to just post a sentence, a link on MEpedia, it would, with time, be incredible.

Thanks for that general invitation and encouragement. It does seem that many members of forum are better at criticizing projects than launching their own.

@JenB - So basically, nothing is going to change with regards to having a system in place to ensure quality content and settle disputes that arise?

I think the point that @JenB is making is don't just sit there and criticize; those criticizing are invited to get involved to bring about the changes they think will be good.

But your comment earlier was:

and I'm not willing to waste effort on a project doomed to mediocrity or worse.

which is a bit defeatist.

Some people here might think that the FMT page should not exist because the evidence for it is weak. I think it's even more valuable that it DOES exist and presents the weak evidence (as weak). It's useful to patients who are thinking of trying an FMT to know how weak the evidence is.

I think that is a very good point.

 

[JenB]

And if you identify with this video, jump in or just come on over. Email info@meaction.net. We'll help you figure out where to go and how to get started. Or if none of the existing projects quite fit, let's start something new together!

https://www.ted.com/talks/derek_sivers_how_to_start_a_movement

 

[Valentijn]

I think the point that @JenB is making is don't just sit there and criticize; those criticizing are invited to get involved to bring about the changes they think will be good.

And my point is that I won't have the energy or interest to fight it out if someone decides "science = bad" and reverts time-consuming content I've put up. So they'll win, and the page will be back to being crap, with nothing to show for it except a lot of wasted effort and one helluva headache.

These are very likely eventual problems which should be dealt with before they arise.