Why MEpedia is flawed and potentially harmful to advocacy

[JenB]

I think the one of the problems I have is with the use of the word 'treatment'. Many of the 'treatments' mentioned are not treating ME but treating specific symptoms or providing symptom relief that may or may not be related to the ME itself.

For example, treatments for Cancer include -- radiation therapy, chemotherapy, and/or surgery. These treatments target the cancer itself. People with cancer can experience a lot of pain. Taking either pharmaceutical pain killers or using alternative pain therapies is not treating the cancer, it is treating the pain caused by the cancer -- treating an underlying symptom. One wouldn't write on a cancer related website that a 'potential treatment' for Cancer is pain killers.

It's very confusing reading about all the many 'potential treatments' for ME. Personally, it's a lot less confusing when symptom relief vs treatments targeted at the disease itself are separated out. Is eating dark chocolate meant to treat ME or is chocolate effective related to some kind of symptom relief? Even on the MEpedia -- within the category of 'Potential Treatments' when you click on 'Cocoa' the first sentence is 'Cocoa (in the form of dark chocolate) may improve the symptoms of Chronic Fatigue Syndrome. [1]' 'May improve symptoms' is a lot different than a 'potential treatment'. I think it would be less confusing if the categories were better defined.

It's a great idea to have many people editing the MEpedia but I still think those that are in charge of it should provide distinctive categories related to treatment, symptom relief, evidenced-based treatment vs dubious treatments etc. The MEpedia will always be way way better than the Wikipedia page on CFS because it has been hijacked by a bunch of agenda-driven morons. MEpedia is still young and a work in progress. There is always the risk that the MEpedia might get hijacked by LPers, etc. We need to be careful that we don't let that happen.

Great! Let's change it then. Someone go rename "Potential treatments" to something else. Move the first sentence of the cocoa page lower down and after reading the study, reframe in a more accurate way.

 

[barbc56]

So do we include any potential treatment such as alien abductions cause cfs. There was an actual article on this but the site seems to be, err, abducted.​

Of course I'm being facetious but where do we draw the line?

TBH, I don't know the answer for this or many other questions posed here. This is daunting work with a lot of potential. Kudos to those who will take this on.

Maybe a good starting point is to target our audience.

Edit. I have no idea what happened to the above format nor how to fix it. Aliens?​

 

[JaimeS]

So do we include any potential treatment such as alien abductions cause cfs. There was an actual article on this but the site seems to be, err, abducted.​

Of course I'm being facetious but where do we draw the line?

TBH, I don't know the answer for this or many other questions posed here. This is daunting work with a lot of potential. Kudos to those who will take this on.

Maybe a good starting point is to target our audience.

Edit. I have no idea what happened to the above format nor how to fix it. Aliens?​

That all depends on whether the paper on aliens was subjected to peer review or published in Aliens Weekly, a newsletter distributed by the author.

This is daunting work with a lot of potential. Kudos to those who will take this on.

It is daunting for an individual. For our community -- we can do it.

 

[Valentijn]

What current treatment pages don't accord with these requirements?

The Fecal Matter Transplant page is the first treatment page I looked at, and it was pretty bad. A single study of shockingly low quality was uncritically summarized as indicating that 70% of patients are cured of "CFS symptoms" with a little poo. I've edited it heavily in the area regarding CFS research (the rest needs work too), and would not be at all surprised if the original editor who I've basically now contradicted at every point is rather upset about the situation. Editing has taken about 5 hours already, and was a pretty frustrating process.

I am not sure why just because folks see entries they uncomfortable with on the front page (which yes, maybe shouldn't be the first thing you see when you arrive) they assume that there's a bunch of junk information.

I think you know of enough narrow-minded doctors and others to see how easy it is for some people to jump to conclusions with little or no rational basis. Having coffee enemas and Rituximab listed with the same status (unless reading the actual entries) is enough to induce intense skepticism and dismissal in some. While those sort are often lost causes anyhow, I think we should at least try to look reputable.

I don't think it makes sense to sort treatments based on how we feel about them – and really major/minor is a way of doing that in the absence of better evidence.

You are badly misattributing my statements by reducing judgements of evidence to nothing more than "feelings". There are valid methods to rate scientific research, and it also is sensible to differentiate between "treating ME" and "relieving associated symptoms".

Many, many pages attempt to do this, again, at least the ones that I have written.

I'm quite sure you aren't the only author there. Which is sort of the point, isn't it? So it doesn't make sense to say something isn't happening just because you aren't doing it. Other people are, and it's making quite a mess.

So my personal reason for embarking on this project was to make it easier to read the top level summary and then dig deeper if you want to.

Then you're probably going to need a process in place to ensure summaries are actually top level. It's naive to assume that people with very different stances regarding science are going to come to an easy and peaceful consensus.

 

[barbc56]

I think there's also the question about the ethical implications and danger of having treatments such as coffee enemas, mms, for example, which can have very serious side effects. All treatments have side effects but there's a difference between side effects of something that has been studied, pretty much knowing the risk/benefit profile verses something that hasn't and the risk/benefit is anyone's guess.

I don't like censorship. So again I'm wondering if this depends on the audience. If the medical community saw the above it might generate negative feedback. Yet if this is general information for patients or others, you're going to want to include other types of information.

Edit. Crossed posts with valen

 

[Snowdrop]

I think there is a problem of believing that people will come to the MEpedia pages with rationality as their guide in reading through the material. There are people who are desperate and people (like me) with no training in science and so on. There needs to be some discrimination. One might imagine journalists perusing the site who have limited time and a deadline it could be confusing to sort what is being suggested as real evidence or are they supposed to carefully parse each study?

Perhaps this problem has been addressed and I missed it.

The other problem that has been mentioned that concerns me is that people outside the ME community find this potentially excellent resource and use it to advertise their product (I'm thinking LP for example) or use it to promote the use of bleach as a treatment--I really don't think it's enough that the level of evidence is thin--again that goes back to my first statement--people aren't always rational and they don't necessarily know how to parse scientific evidence--why should they when it seems some scientists can't do that either.

 

[MEPatient345]

MEPedia is just a different tool and different format resource of the type of content that exists on Phoenix rising in forums and in the main pages. Like this one:
http://phoenixrising.me/the-amygdala-retraining-program

Journalists / patients know that wikis are not Nature magazine, any more than Phoenix rising is. They are an attempt to gather, sort, cite and find information. Why is there so much angst against MEPedia, but not against these forums, or the main Phoenix rising site, which is currently a primary source of information on ME for many patients? Couldn't the same criticism be applied here?

 

[Valentijn]

Why is there so much angst against MEPedia, but not against these forums, or the main Phoenix rising site, which is currently a primary source of information on ME for many patients?

Because people want to use ME-pedia as a resource to widely advertise as an information source about ME. Phoenix Rising, on the other hand, is only advertised as a patient resource, primarily a generalized ME patient forum.

 

[MEPatient345]

Because people want to use ME-pedia as a resource to widely advertise as an information source about ME. Phoenix Rising, on the other hand, is only advertised as a patient resource, primarily a generalized ME patient forum.

So, by that rationale, there should be no widely available information source on ME -- a disease we are trying desperately to educate the public about -- because none of us can agree on how to talk about it? Or because we won't spend the time to create it and make it good?

We are the experts on this disease. We could make it good. Isn't that what we all want?

 

[mfairma]

So much discussion of treatments, but, for me, again, the question is what is this trying to accomplish and is this the best way to accomplish it? I feel like the way the community tends to operate, and the reaction I see here, is effectively, "If you don't like our hole, it's because you're not helping us dig," which isn't really engaging with some of the structural criticisms others have made in this thread. I don't think the wiki is inherently a bad idea, necessarily, but there are questions of execution and also the question of whether there are other options to achieve the same goal(s).

I have largely been unable to do the sort of independent advocacy I used to do because of severe cognitive relapses, but the biggest reason I don't try to contribute in other ways is because I don't feel that there are enough people trying to start with the problem and then find the solution. The standard operating procedure seems to be to find an idea and then try to shoehorn it. The problems this disease and this community faces are too vast to not try to think and work more strategically. The bulk of discussion here has been on treatment options and the relative merits of different levels of depth of discussion, but, given that none, or very few, of these options are consistently making patients better, is it really the best use of energy for the community to collate the panorama of possibilities lesser than what we should have? Obviously, it is for patients to decide how they want to engage, and that's of course their prerogative; there are many priorities and mine may not align with others, but with such a terrible situation, I question whether this engagement is really the best way to respond to the urgency the situation demands. That's why I don't participate and I think there are others out there who feel the same.

 

[Valentijn]

So, by that rationale, there should be no widely available information source on ME -- a disease we are trying desperately to educate the public about -- because none of us can agree on how to talk about it? Or because we won't spend the time to create it and make it good?

There should be a widely available resource, but it's pointless to make one of low or mixed quality. Editing wiki pages is complicated, and I'm not willing to waste effort on a project doomed to mediocrity or worse.

We are the experts on this disease. We could make it good. Isn't that what we all want?

I don't know if that is what we all want. People heavily invested in ME-pedia seem to be extremely offended by the constructive criticism offered in this thread, and opposed to making any changes. If they can't acknowledge that there are problems, there really is no hope of fixing those problems.

Currently there is no advice regarding scientific evidence for ME-pedia entries. The only suggestion for creating content is entirely summed up as "Be Bold!"

 

[MEPatient345]

I don't know if that is what we all want. People heavily invested in ME-pedia seem to be extremely offended by the constructive criticism offered in this thread, and opposed to making any changes. If they can't acknowledge that there are problems, there really is no hope of fixing those problems.

I am not personally heavily invested in MEPedia specifically. I am trying to make millions missing materials, and am pretty heavily invested in making it a success, as much as a bedridden person with access to the Internet can be. MEPedia is a channel that I see as having a pretty minor role right now in supplying some primers for people who want more info. I would say "widely advertised" is an overstatement.

As for people being offended and not wanting to change.. I'm sorry that's how you are perceiving it. Practically every comment by people involved in the project has been inviting change and participation, including suggesting a get together to try editing. It's definitely frustrating to have a project not only judged but completely denigrated (see title of thread) in a semi complete state. It's also frustrating to see criticism of "content" such as "be bold".. When it's been pointed out numerous times that content can be edited, improved and added to by patients. Or added to the list of "to-dos".

 

[Gingergrrl]

It´s not that ME is caused by goblins, is it?

I'm confused what this means or how it relates to my questions? I was asking my question b/c I was confused how hundreds of people could all go in and edit something b/c then people might make an edit that the founders of the wikipedia site disagree with or two people might make edits that contradict each other, etc. It would seem like an endless free-for-all.

This seems similar that on PR I can only edit my own posts but I cannot go in and edit another users posts. I really was asking a legitimate, sincere question b/c I had not heard of such a thing before (the concept of me as a random person going in and editing someone else's post, blog, writings etc) or whatever it would be called?

I know ME is not caused by goblins and that it has a very serious cause and therefore needs very serious treatments (which is why I was questioning something like writing about cocoa, etc, as a treatment.)

I definitely do not know anything about wikipedia to add to this thread in a constructive way but do want to clarify that I was never making light of what ME is caused by, or should be treated by, (and my comments were actually the opposite). Some treatments can be dangerous even if they seem benign (just as an example, I got pulmonary edema from one liter of IV saline and got severe akathesia from Valcyte) and then two years into this illness when I developed MCAS, some of the treatments listed could give me anaphylaxis or potentially kill me so I was trying to say that a medical disclaimer seemed appropriate to add.

Am thinking about backing out of this thread now and leaving it to the experts who know more about wikipedia, etc.

 

[Jonathan Edwards]

@Jonathan Edwards thinking about it a little more, surely PACE has affected availability of evidence based treatments here in the UK though... by pushing research in the wrong direction (psychy) or diverting funding?

Don't think so. All the colleagues I know who treat ME/CFS or fibromyalgia have never heard of PACE. I is just not on their radar. The clinical problem has always been there and doctors have always had to deal with it as best they can. The problem for research is nobody knows where to start because there are no biomarkers to point to something to investigate. PACEs a disaster but I don't think it has anything to do with the absence of other research. And just because some high profile people have one theory about a disease does not stop other people testing other theories. When I tested rituximab for RA everyone else thought I was nuts. But I had reason to think it might work.

 

[Valentijn]

Practically every comment by people involved in the project has been inviting change and participation, including suggesting a get together to try editing.

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.

Dealing with a wiki is hard enough. If lengthy disputes without an easy resolution are also a likely consequence, it is not a worthwhile way to spend my time and limited cognitive capacity.

 

[Kati]

This is deeply confusing. MEpedia is a reflection of the people who choose to contribute to it. It will thrive when we all pitch in. It will fail when people who are able to contribute don't. It is open source. Wikipedia existed and was pretty terrible for years before anyone on this thread had even heard of it, long before there were moderators or medical editors. It took loads of time and investment before it even became anything.

As for all of this editorial feedback – join the project. Help shape it. There are folks actively engaged in these conversations and contributing to the project. Sadly, not enough. You can't build something that doesn't exist without going out and building it. And in the process of doing that it will suck, for a very long time, until it doesn't. But hard work is the only answer. Truly. We've had far more people over the course of the project complain about the content and ask us to edit it on their behalf or critique our editorial judgment (as though there is a central authority) rather than jump in and edit themselves.

As for fasting and cancer, I am really sorry to hear about your mother, Kati. It's important to emphasize that the page is simply citing research studies on its use as an adjuvant for folks undergoing chemotherapy. These are studies published in Nature and Science. That page does NOT say that it is a treatment for ME – there have been zero studies on that. But since some people with ME do fast or try ketogenic diets, it is an *early* attempt to cite some of the research on fasting and its effects on human health. That research can't speak to what your mother's experience was. It is simply the research.

There is even more evidence for a ketogenic diet in various diseases (if not ME), which has similar physiological effects as fasting: http://me-pedia.org/wiki/Ketogenic_diet

Chocolate is there because Mendus is running a citizen science experiment, which is enough IMHO to make it relevant to the community. It increases populations of bifidobacteria, which may be low in us. (You can see the rationale for the Mendus study here: https://drive.google.com/file/d/0B3pmHE2RSVQmVm5qejFSSEtmNm8/view) Is it a potentially useful supplement? Is it totally kooky? That's not exactly for me to judge. And there isn't much evidence either way. I just add information to relevant pages when I come across it. If caffeine is bad for POTS and ergo, chocolate may be bad for POTS, then that should be added to the page. The person who complained of that omission is the best person to add and cite that important information.

I am not sure why it says "Potential treatments" on the front page There's probably a better word. "Sh** folks in our community try." And if they are trying it, then it should have a page, and that page should lay out what science does or does not exist that might support the idea that that treatment could have some value. The current arrangement does not make any attempt to rank potential treatments in a hierarchy nor does it make an judgment about whether all things are equal. These are just listed there to encourage folks to jump in and edit. I think it is worth creating pages for treatments that people in the community are trying *even if there is no evidence to support it* so that it's easy to look and find out that there isn't evidence. That is just as important as creating pages for treatments or mechanisms for which there *is* high quality evidence.

Anyway, it's strange to litigate this on PR when you are all more than welcome to come over to our editors' group and discuss these issues or better yet, go right in and edit the page. Content suggestions that we are meant to implement are unlikely to be implemented due to lack of capacity. Actual edits are *very* welcome. If you can see how MEpedia could be better, then come make it better. If you think it's a totally doomed concept, then move on and go start or contribute to something else more aligned with your values or vision.

My best guess is with hundreds of millions in funding for research, the self-help treatments will get thrown overboard as the evidence will point out to pathology and to treatments which will become the gold standard.

My mom passed away 25 years ago. I became a chemo nurse in 2001 and in all those years, fasting has not taken over and revolutionized the treatment of any cancer. The evidence still remains that surgery, chemotherapy (including targeted therapy) hormone therapy and radiation are the main and universally accepted treatments for cancer.

Moreover, because a small number of patients try a specific alternative treatment or diet, it does not constitute evidence. Who says 'I ate chocolate for 30 days in a row and I got better'- sorry, it does not carry much weight to me, and the same goes for ketogenic diet which carries risks. Then you add the fact that if it didn't work for individuals, there will be people on this very forum who will say: 'but you didn't do it right!'- blaming the patient, this happens a lot in the methylation world. Over-methylated, undermethylated, methyl-trapped-and with all that, 99% of mainstream physicians have no clue what methylation means.

The same goes for 'detox'. What a mess. Ask your doctor whether your body is detoxing well. It is not a highlighted concept in medicine, it is a naturopath concept. Our body is 'detoxing' just fine. We do not need to remove heavy metals nor do we need to pull out all of the amalgams of our bodies.

Lastly, because reference to litterature has been provided does not constitute evidence in the minefield of published research. The IOM committee reviewed thousands of papers and very little was approved as strong evidence.

 

[Hip]

Because people want to use ME-pedia as a resource to widely advertise as an information source about ME.

This seems to echo what A.B. said earlier:

As far as I understood, there are plans to take advantage of the publicity generated by the publication of Jennifer Brea's Ted talk by linking to a website with good information on ME/CFS. MEPedia has been suggested as this site. So MEPedia would have huge exposure and be advertised as source of good information. Possibly also during the next millionsmissing campagin.

If you look at MEPedia, it's already has sections targeting doctors, journalists, etc. ie. not patients, but outsiders.

I hope it's clearer now why I'm singling out MEPedia and why I'm concerned what outsiders will think.

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

And I think that's why the criticism in this thread comes over very harsh, because changing the target audience, even if everyone agreed to do it, is like hearing from your doctor that you need an invasive and complex major surgery.

I like the fact that the MEPedia content seems to be targeted mainly for patient needs, because I am a patient. However, I can also see the advantages of making it look "respectable" from the point of view of doctors.


If it is to be targeted at doctors, then perhaps alternative and supplement treatments will put them off, because many doctors see that as a lot of nonsense.

But if it is targeted at patients, then any treatment, including alternative ones, that could potentially improve some of the symptoms of ME/CFS is likely going to be of interest to at least some patients.

Maybe one answer to this disparate audience issue is having different sections of the MEpedia for different people. You sometimes come across this on medical websites, where at the outset they ask you whether you are a doctor or a patient, and then take you to the appropriate portion of the website.

 

[Gingergrrl]

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

That is the question that I was trying to ask but you asked it much more concisely! Is the MEpedia for patient use (like Phoenix Rising where everyone shares ideas and personal stories) or is it meant for doctors/clinicians etc to read to learn about the disease? After reading this entire thread, I am still unclear! I know when I do a Google search, that wikipedia often comes up as one of the first listings for the general public so is MEpedia meant to be like wikipedia (or a type of spin-off designed the same way)?

 

[barbc56]

@Gingergrrl

I'm unclear about this too. Nor am I wiki savvy so I might have missed something.

Is this a question worth looking into? Do we need to have a targeted population? I would think so but then I an very confused at this point but that's on me.

Despite.that, reading others posts has been very helpful. I think it's important to realize asking questions and differences of opinion are just that and not necessarily a personal criticism. We are all at different levels of understanding.

 

[Mel9]

It is sad that people wasted so much time on Wikipedia! Foolish, shortsighted people. They should have spent that time complaining about Wikipedia somewhere else!

But I love Wikipedia. It 'points me in the right direction' on topics I know little about.