Why MEpedia is flawed and potentially harmful to advocacy

[JenB]

@Valentijn to have disputes to settle, we'd need to have contributors. We'll cross that bridge when we get there. I can't wait for the day we have a large enough community of contributors that these mechanisms are necessary. It's like now, we're just starting to think about the structure of #MEAction USA. It's needed - rules, committees, mechanisms. But it would have been silly and onerous to do that at day one, when there was no group of patients to organize or arbitrate between. For now, we are a small enough group that we simply discuss and arbitrate our problems/questions here: https://my.meaction.net/local_chapters/mepedia

 

[Valentijn]

@Valentijn to have disputes to settle, we'd need to have contributors. We'll cross that bridge when we get there.

If you want more contributors, build the bridge first. The lack of that bridge is the only reason I'm not jumping over.

 

[MEPatient345]

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.

Valentijn, there are some "principles" here, and in the "talk" tab, they can be added to and discussed.
http://me-pedia.org/wiki/MEpedia:About
Also, there is a history kept of every page change. So if you made a change, and a malicious or uninformed editor edited over it, it could still be reversed to your original edit.

 

[JenB]

If you want more contributors, build the bridge first. The lack of that bridge is the only reason I'm not jumping over.

I'm not even sure what that means but if you can help us understand the bridge you need...? To me it sounds like you are looking for a later stage project to get involved in. Not one that is finished, but one that is just much stronger than it is now. Which is fine. I hope we can get there in the next year. I think then we'd have a lot more of the things you are looking for. Hopefully, others will jump in earlier, though, at this riskier phase and help us keep building out content and developing policies. It's an iterative and evolutionary process. And can only happen when people join. I don't know that we can do much to make it a more comfortable or attractive proposition until we have more help.

But if there are folks reading this who are ready to jump in now and help us get to that later stage, we are here, we are organizing meetups and edit days/hackathons. Help us build a bridge for @Valentijn

 

[JenB]

@Hip I had no idea you wrote the roadmap document but I recently stumbled across it when researching coxsackie. Thank you for this page!

I do think that it would be great to make more explicit some of our implicit editorial policies over time. The page @Silencio just shared lays out some of the principles that could, if elaborated or made more concrete, become policies. We don't have the capacity yet to support a team of moderators or editors, but we could start writing out more specific policies. Honestly, right now the biggest hurdle is just helping people learn that they CAN edit a Wiki and then getting them feeling comfortable enough to not be daunted by the need to code. It's not that we don't eventually want all of these things folks here are suggesting and grappling with. Or even that we haven't thought about them deeply. It's that we're just way lower down on the Hierarchy of Needs right now.

 

[Valentijn]

Valentin, there are some "principles" here, and in the "talk" tab, they can be added to and discussed.
http://me-pedia.org/wiki/MEpedia:About

Yes, it's decent. I'd suggest including the "About" section in the menus on the left, instead of just being buried in the "Welcome" text on the front page. And preferably referring to it in the help section for editing pages, instead of "be bold", which can be interpreted in some really horrible ways.

I'm not even sure what that means but if you can help us understand the bridge you need...?

The same thing myself and others have been saying over and over. A method for broadly determining which data trumps others (high-quality scientific research > other research > anecdote > implausible theories), and a process in place to resolve related disputes.

And there really should be separate lists for realistic potential ME treatments versus realistic symptom treatment versus bizarre treatments which make no sense at all and have no quality evidence supporting them. This could even be done with sub-headers for an all-inclusive list. But if quackery and rigorous scientific summaries are going to be listed side by side, with no apparent division without reading the actual pages, the rigorous scientific summaries are going to be devalued and not even glanced at.

 

[JenB]

And there really should be separate lists for realistic potential ME treatments versus realistic symptom treatment versus bizarre treatments which make no sense at all and have no quality evidence supporting them. This could even be done with sub-headers for an all-inclusive list. But if quackery and rigorous scientific summaries are going to be listed side by side, with no apparent division without reading the actual pages, the rigorous scientific summaries are going to be devalued and not even glanced at.

It seems, then, that most of this is about the front page. It's been edited based on feedback. How does it look to you now?

Regarding what evidence trumps what, that's implicitly laid out in the principles with what are essentially greater than/less than signs. Perhaps it can be further elaborated?

Also, I am starting to get the strong feeling that you are a very good person to help us to do the very elaboration and deep thinking about policies you (and we!) need, @Valentijn ....

 

[Valentijn]

It seems, then, that most of this is about the front page. It's been edited based on this feedback. How does it look to you now?

I don't really see anything directly addressing these concerns, with the partial exception of the link to the "About" page.

Edited to add: I think you're referring to the "Diseases" section. That doesn't really apply to treatments in the same manner, as treatments don't need a hypothesis, and often don't have one. I'm also uncomfortable with the term "hypothesis" being used for both realistic hypotheses and extremely speculative musings, even in the context of "disease".

Regarding what evidence trumps what, that's implicitly laid out in the principles with what are essentially greater than/less than signs. Perhaps it can be further elaborated?

It needs to be explicit. Both to help avoiding problems in the first place, and to make them simpler to resolve. And at some point, there's probably going to have be some people (others than those involved in the disagreement) deciding how to resolve it.

 

[JenB]

I don't really see anything directly addressing these concerns, with the partial exception of the link to the "About" page.

Edited to add: I think you're referring to the "Diseases" section. That doesn't really apply to treatments in the same manner, as treatments don't need a hypothesis, and often don't have one. I'm also uncomfortable with the term "hypothesis" being used for both realistic hypotheses and extremely speculative musings, even in the context of "disease".

It needs to be explicit. Both to help avoiding problems in the first place, and to make them simpler to resolve. And at some point, there's probably going to have be some people (others than those involved in the disagreement) deciding how to resolve it.

Yeah...fundamentally I don't think the project can engage in these sorts of qualitative judgments. We can judge how strong a specific piece of research is. But we can't rank some hypotheses or treatments as somehow better than others. It introduces a whole lot of completely impossible to resolve questions. They exist (these hypotheses) so we grapple with them, period. The science within the pages shows which have stronger support than others.

Anyway, all of this seems to be front page stuff. Also if you have ideas for changing the page, then just join the conversation about the front page in the editor's forum. We can't guess at what you want. You know what you want, so go ahead and do it!

 

[Valentijn]

But we can't rank some hypotheses or treatments as somehow better than others. It introduces a whole lot of completely impossible to resolve questions.

The plausibility and overall evidence base of each treatment can be ranked. This has frequently been done in ME reviews (IOM, NICE, Cochrane, etc).

 

[A.B.]

When I wrote the original post, I was afraid that during the next #millionsmissing campaign, we would see banners advertising MEPEdia as reliable source of information to the broader public. This seems unlikely now.

I can see the value of having a repository for information, provided that there is some sort of quality control. There doesn't really seem to be a plan either other than hoping things will just fall into place. so to get you started:

I propose the following structure for MEPedia:

1. Articles will fall in one of several categories: [list of categories goes here].
2. Each category will have its own set of rules. This allows editors to finetune the rules for each category. Coming up with rules that are good for every type of page seems very difficult.
3. Each set of rules gets its own page.
4. Every article must specify which category it belongs to.
5. An article can only belong to one category.
6. There should be as few categories as possible.


Some basic rules for the "Treatments" category:

1. It must be specified whether the treatment is intended to treat the disease mechanism of ME/CFS or merely some symptoms commonly found in patients, such as nausea. In the "some symptoms" case, it must be specified which symptoms.

2. The level of evidence must be specified. Proposed grades: untested, low (anything less than a RCT with blinding), medium (a single RCT with blinding), high (multiple RCTs with blinding).

3. The treatment must be in accordance with known laws of physics (no homeopathy). and biologically plausible (no leeches enter the body and breed in humans type of stuff, yes that was blogged about here a few days ago).

4. For all clinical trials cited in support of the treatment, the criteria used to recruit the cohort must be described.

5. Treatments with "untested" level of evidence must prove that they are notable. Pages about treatments that are not notable must be deleted. "Notable" remains to be defined further, but the idea is that Joe Average should not be permitted to post his own treatment regimen just because he thinks it helped him.


Please discuss these rules before applying them. I'm getting tired now and need to rest a bit. Getting them right is crucial and getting them wrong means more work later on. If in doubt, make them stricter than you think they need to be. It's easier to relax them later than it is to tighten permissive rules.

PS:

6. Treatments must be unique. Treatments that resemble each other should be merged into the same page. This is to prevent having different pages for "positive affirmations" and "positive affirmations and hand gestures" and "extra positive affirmations". Therapists like to invent and promote their own therapy but these therapies tend to be very similar to each other and we need to keep them on the same page because therapists will want to promote their own if MEPedia ever becomes popular.

 

[mfairma]

Jen, perhaps it is because we are both relatively younger, but both my wife and I heard about Wikipedia within a year or so of its creation. It seems a bit uncharitable to suggest that no one else could have heard about it.

That aside, I don't see much in the way of clear justification of what problems MEPedia solves, why it is the best way to solve those problems, and why so much energy should be spent on it relative to other avenues.

The difficulty of sorting through treatments seems the clearest use case from what you've written and from where commenters have focused in this thread, but advancements in research will make most of the energy spent in that space somewhat moot and devoting time to that space is already questionable given that only a few treatments have any consistent value. Will having spent time on threads such as cocoa and coffee enemas provide wide benefit when patients can access treatments like ampligen and Rituxan? I don't know. Perhaps, though I suspect not.

If you set aside sifting through potential treatment options as the primary use case, the other use cases are considerably narrower. The most obvious is as a general reference for learning about the disease for patients or, potentially, other stakeholders such as caregivers, doctors, journalists, political folk, etc, more in line with the traditional use of wiki. That use case holds the most value, in my opinion, but I question whether the more democratic processes of a wiki are the best way to assemble that sort of information given the complexity of ideas, depth of knowledge required, and general controversy that surrounds the disease, even within the community. How do you handle, for example, the people who argue that ME is just untreated Lyme disease or that we are all sick because of mold exposure or that person going around saying we all have non-HIV AIDS. How do you handle judgments about the role of insurance companies in the trajectory of how this disease has been managed? Or, alternatively, has HHS historically sought to marginalize this disease or have they just been incompetent, or some other explanation? It may be manageable to discuss each of these sorts of issues in isolation, but when it comes time to bring things up a level, value judgments must be made. Who has the ultimate authority to make those judgments? And is it worth the energy and friction to reach consensus among a group?

I also question whether, with such little capacity for advocacy, it makes sense for the people best positioned to assemble this information to spend their limited energy in this space. Does it make sense for the more recognized experts on history, politics, and biology, etc. (such as Tom Kindlon and my mom, Mary Dimmock) to spend their energy trying to create these materials on a forum like wiki, when there are other potential projects that could use their expertise? If not, does it make sense, and is it even workable, for the rest of us? I think there are possibly other, better ways to achieve the educational objective, but that, of course, is just my opinion.

There are significant structural and strategic questions that I haven't seen answered in this thread that, it seems to me, should have been worked through at the outset.

 

[geraldt52]

If I'm being honest, whenever I see the incredible plethora of things that are routinely discussed as "treatments", even I, with ME/CFS now for over 30 years, have trouble not thinking that there must be a psychiatric element to the illness. I think it just strikes most completely reasonable people as implausible that the incredible number of "supplements", the incredible number of "drugs", the incredible number of "protocols" being advocated is not somehow in itself pathological. It just plays right in to the "all in their head" narrative...and as I say, it strikes me that way, so how can it not strike the general public/doctors that way?

I myself would not find MEpedia useful, so perhaps my opinion isn't worth much. But, I can see that MEpedia might be helpful to some, and I can also see that it could be "politically" damaging to the cause, particularly where the treatments are concerned.

I would think that at the very least the "Treatments" section should start with a page with bold text that states that "There is no known treatment for ME/CFS, because the cause is unknown". Then I think it would be preferable that any supplements, or drugs, or protocols, anything that someone has found to be helpful, be listed only under a list of "Symptoms" that someone may have found them helpful for. As a for instance, if someone finds melatonin helpful for sleep, then it should be listed under "Symptom, Sleep", not as a treatment for ME/CFS, which it clearly is not.

 

[Hip]

I propose the following structure for MEPedia:

1. Articles will fall in one of several categories: [list of categories goes here].
2. Each category will have its own set of rules. This allows editors to finetune the rules for each category. Coming up with rules that are good for every type of page seems very difficult.
3. Each set of rules gets its own page.
4. Every article must specify which category it belongs to.
5. An article can only belong to one category.
6. There should be as few categories as possible.

These are all very interesting suggestions, but it seems clear that at present, MEpedia is running on a skeleton crew: @JenB wrote earlier that 90% of MEpedia content is written by just two people. So that is a huge project which is primarily supported by just two editors.

So it is all very well envisaging these grand improvements and ideas about restructuring MEpedia, but it seems that what MEpedia really needs right now is simply more manpower, because without that, such ideas are unlikely to be implemented.



From my own perspective (and I suspect this may apply to others here), I like writing on PR, simply because the posts here become an interaction with others in the ME/CFS community, and I really appreciate the social contact and feedback, especially as members here are often knowledgable and have their own opinions, which leads to good discussion.

I think if it were possible to create a similar social environment when editing MEpedia, it might start attracting more editors. I know on Wikipedia, you do get a kind of social environment on the talk pages associated with each article. So possibly the MEpedia talk pages could also become a "hangout" environment.

What might work is if say three or four people from this forum who are knowledgable in the same specific topic all agreed to edit the MEpedia page relating to that topic. Then those three or four people could en masse go over to MEpedia, and start discussing on the talk page how they are going to write the MEpedia article. That would create an attractive social ambiance, that might start attracting editors, because it is more enjoyable to work together.

 

[Snowdrop]

I don't remember the thread but I think @Kati shared it and I bookmarked it--a page on letter grading evidence (A,B,C etc)
That would be useful but it would require expertise, a lot of time but it could be something to consider for the future.
http://3rdparty.naturalstandard.com/index-herbs.asp

It is whatever we make it, truly.

And that's the point. I hear you when you say the project isn't there yet for considering some of the suggestions. I have no way of evaluating whether that will be seen as necessary to the infancy of the project or not. Does it mean that once it gets to growing a certain size then it will be time to make changes where others (possibly the original poster) can't make changes because of an 'evidence' upgrade?

If the wiki is merely a repository meant to be an historical document--a sort of state of the ME community doc then these issues are at cross purpose. But I think the wiki has more power as a repository of critical information.

Another problem of accepting anecdotal reports is that as we know correlation is not causation. we might believe something was effective that in fact was not. And we--none of us--can predict how that treatment that improved QofL today whether it is sustained over long term or if it stops being effective--as many things do(possibly after the glowing post is written)--or if there are bad effects after long term use.

It's fine to say that it will all evolve but meanwhile there's the potential that it fails because people say don't go there the info is unreliable.
That happened exactly with wikipedia. A geologist I knew (a mother at my children's school) warned anybody who would listen in the early days of W that it was not to be trusted. I know that we all go there now so maybe it's moot but I expect that the attitude played some part in the way it's handled now.

 

[TigerLilea]

If I'm being honest, whenever I see the incredible plethora of things that are routinely discussed as "treatments", even I, with ME/CFS now for over 30 years, have trouble not thinking that there must be a psychiatric element to the illness. I think it just strikes most completely reasonable people as implausible that the incredible number of "supplements", the incredible number of "drugs", the incredible number of "protocols" being advocated is not somehow in itself pathological. It just plays right in to the "all in their head" narrative...and as I say, it strikes me that way, so how can it not strike the general public/doctors that way?



I would think that at the very least the "Treatments" section should start with a page with bold text that states that "There is no known treatment for ME/CFS, because the cause is unknown". Then I think it would be preferable that any supplements, or drugs, or protocols, anything that someone has found to be helpful, be listed only under a list of "Symptoms" that someone may have found them helpful for. As a for instance, if someone finds melatonin helpful for sleep, then it should be listed under "Symptom, Sleep", not as a treatment for ME/CFS, which it clearly is not.

I totally agree with everything that Gerald has said above. When "coffee enemas" and "ozone" are listed as a treatment for CFS, it makes us sound like a bunch of nuts.

 

[Kati]

The other hurdle we are facing is that the IOM was unable to determine subsets and we know this is a heterogenous illness. We can categorize it in a severity scale, but we know there are subsets. Until the scientific community determines via science what these subsets are, we are stuck in trying to describe a disease that may become several diseases.

It is still not clear (at least to me) whether Lyme disease is a co-morbidity or a distinct disease. Many in this forum will say it is co-morbid, while many others in other community do not think so.

In my opinion, only science will determine this, not wiki. Not this forum. Not someone's opinion.

 

[Hip]

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

I was having an online conversation with someone whose wife is a neurologist in a major teaching hospital in the US. He told me that his wife and all the neurologists she knows, from her own hospital and from other hospitals, view ME/CFS as psychosomatic. Of course I did my best to argue against this, but it made me start to realize that the psychosomatic view of ME/CFS may be very common among medical professionals in the US.

Perhaps we tend to think that because there are a couple of dozen or so internationally renowned ME/CFS specialist doctors in the US who understand ME/CFS is an organic disease (and a dearth of such doctors in the UK), it is the US but not the UK which views ME/CFS as a real biological illness.

However, outside those two dozen ME/CFS doctors, it's quite possible that most medical professionals in the US may also view ME/CFS as psychosomatic. I don't really know, though, because I have not seen any surveys on doctors' opinions of ME/CFS in the US.

 

[CFS_for_19_years]

The plausibility and overall evidence base of each treatment can be ranked. This has frequently been done in ME reviews (IOM, NICE, Cochrane, etc).

One can follow the example of examine.com, a website that reviews the effectiveness of nutritional supplements. They use the following stratification of evidence:

Level of Evidence

Robust research conducted with repeated double-blind clinical trials

Multiple studies where at least two are double-blind and placebo controlled

Single double-blind study or multiple cohort studies

Uncontrolled or observational studies only

 

[Comet]

I love the idea of having a wiki for ME, but I agree that it should be held to the highest of standards. If not, why point people in it's direction?

I've read a few times now (do not ask me where) how impressive we, as a community can be, when one bothers to look. If we want people to take us seriously, let's represent ourselves that way.

He told me that his wife and all the neurologists she knows, from her own hospital and other hospitals, view ME/CFS as psychosomatic. Of course I did my best to argue against this, but it made me start to realize that the psychosomatic view of ME/CFS may be very common among medical professionals in the US.

In my 16 year journey with ME/CFS, I have yet to encounter a doctor who did not think it was psychosomatic (with the exception of a well known specialist in Manhattan who's protocol, unfortunately, did not help me). And, in my opinion, there is no arguing against it at this point. Although I continue to try...