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Why MEpedia is flawed and potentially harmful to advocacy

Discussion in 'Advocacy Projects' started by A.B., Jul 15, 2016.

  1. A.B.

    A.B. Senior Member

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    Politically, ME/CFS is a time of transition. It's taken a little more seriously. It could finally become a disease with a proper research program and strategy. The idea that patients are not sick or not as sick as they say they are is still widespread.

    We are looking forward to the publication of Jennifer Brea's Ted talk, hoping that it will have a big impact. There has been the idea to use MEpedia to inform the public and provide good information that hasn't been tainted by ideas from psychiatry.

    (please brace yourself for harsh criticism)

    The problem is that MEpedia is at risk of becoming just another page promoting all sorts of whacky treatments.

    This does us no favors. For one, we look like hypocrites criticising psychiatry for poor science when we have even lower standards ourselves. Second, it may give the impression that patients are content with placebo treatment or supplements, which fits the common misconception that patients are not (as) sick. Third, it reduces the signal to noise ratio of the project, while we want MEpedia to be credible and reliable source of information.

    As the politics around ME/CFS change, so should the patients approach. The time of having no choice but to experiment with highly speculative treatments will hopefully soon be over.

    I think the section concering treatments should be be trimmed down to only a few pages: treatments whose evidence is supported by clinical trials, and where the results are credible. "Credible" needs to be clearly and unambiguously defined. Biological plausibility, good quality of the studies, and replications all seem to be important components of credibility to me. Discussion will be needed on this point.

    PS: concerns about reliability of information is one reason why I have been reluctant to contribute to MEpedia.
     
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  2. A.B.

    A.B. Senior Member

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    This touches the issue of how one should solve the problem of determing which information is reliable and which is not. The evidence based medicine movement is an attempt to solve this and it works poorly in practice. Clearly, this is not a simple problem.
     
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  3. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Hear hear A.B
     
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  4. roller

    roller wiggle jiggle

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    "evidence based" lol..
    they say it, and everyone just parrots it.

    its even pervert, how they try to talk down alternative medicine with their "evidence based" argumentation.

    there is nothing evidence based. not even their diagnose is evidence based.
    its all merely dumb guessing.

    there is no evidence for vaccination, there is no evidence for antidepressants, for ppi's nor for stereoids.

    where is their 'evidence', pls?
    used cars salesmen.
     
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  5. A.B.

    A.B. Senior Member

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    One, in my opinion, good solution would be to have a single page on treatment, with material written by doctors.

    Then pages on promising treatments, selecting only the notable and credible ones.

    That would be a credible approach to provide reliable information. Sometimes less is more.


    PS: other advantages of this solution:

    The "single page on treatment written by doctors" gives doctors unfamiliar with ME/CFS guidance on how to treat patients. Patients can print it and take it to their doctors. The information must come from a trustworthy source, such as the Norfolk and Suffolk ME service which is preparing this type of material according to recent tweets.

    One goal here is also high signal to noise ratio, and listing every supplement under the sun that might be relevant is very counterproductive. Patients don't have the mental stamina to process all this information and might find it difficult to distinguish pure speculation, or in-vitro results from other things that could plausibly work. Doctors don't have the time or motivation to look through all of the pages.
     
    Last edited: Jul 15, 2016
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  6. Skippa

    Skippa Anti-BS

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    What about putting in a "dubious" tag or something like it?

    Eg: this page has been flagged as dubious. Dubious pages are not supported by mepedia but their inclusion reflects the anecdotal accounts experienced by some patients. Please approach dubious treatments with caution as they are not backed by science and do not appear to have widespread benefits.

    And yes, reduce the amount of times these things appear, especially directly on the homepage.

    By the way, whilst we're on the subject, the whole homepage is a bit of a mess.

    What about a "where to begin" or "start here" section, with nice big links such as "what is me?" and perhaps even "controversy".
     
  7. Kina

    Kina

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    Evidence-based is extremely important. People don't just 'parrot' the research. Having been to 3 Invest in ME conferences, the research is vital to get ME recognized as a physiological disease. There is a lot being researched right now -- biomarkers, microbiome, Rituximab and so on. This research is discussed here and when people disagree or find faults with the research, there are many lively debates. If we all just parroted the research, then research like PACE would have never even being questioned.

    Nobody is trying to 'talk down' Alternative Medicine -- we do not have to accept that every alternative treatment out there works or has any merit at all. And as a group that is desperately trying to get ME accepted as a real physiological serious illness, we need to avoid promoting quacky useless whacko treatments.

    There are alternative treatments that seem to be helpful and there are some absolutely nutty ones.

    MODERATOR saying: If you want to start a thread related to evidence-medicine by all means start one. This thread is about why MEpedia is flawed not about the very large and nebulous topic of 'evidence-based' medicine.
     
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  8. Kina

    Kina

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    There is a website related to 'natural therapies' that actually posts related research. Eg. if a therapy has no research to support it, it will state:

    This way it is clear to those researching it that there is no reliable evidence (usually anecdote-based) to support something as a treatment. I think it's important to point out what is questionable and not based on research. Information written by doctors related to promising treatments -- notable and credible ones would be excellent.
     
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  9. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Sounds more like constructive criticism.

    Have you forwarded your feedback to the MEPedia folks? That may be helpful.
     
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  10. A.B.

    A.B. Senior Member

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    Not yet. I wanted some discussion on this, to see where I stand in relation to others and how this idea is received. I'm particularly interested in comments from folks currently working on MEPedia. @JaimeS is involved, right?
     
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  11. olliec

    olliec

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    I'm disheartened to read your criticism. I'm one of the contributors to MEpedia and I think you have misunderstood both the aims and function of the project. MEpedia is an encyclopedia, so it does not express views and it certainly does not recommend treatments. It exists to state the facts, and all statements made should be referenced with a citation, just like Wikipedia. If some patients are using treatment X (whether of value or not more generally), then it should have a page, and that page should include the evidence. Many patients would agree that most ME/CFS research is poor - too small, badly designed, not replicated, bad cohort definitions, etc etc. But there is still value in collating it all by treatment, body system, researcher, etc, so people can make an informed choice and easily educate themselves about it. The Rituximab page specifically refers to the risks and links to resources, and also some content on that page was contributed by Jonathan Edwards. Other pages have had contributions from scientists. Any page for a dangerous/poor treatment should state clearly that it is dangerous (with evidence) or that there is no evidence at all of efficacy. If a page does not say something like that, then that is an improvement that needs making. MEpedia pages are there to provide the facts (or as close as we can get to them) and yet it takes time to collate them.

    A very deliberate decision was made last year to label the treatments category "Potential treatments" so MEpedia is clear that these are possibilities. If there is no evidence at all for a treatment (even anecdotal) then it may well make sense to consider a new category for "Ineffective treatments" or "Treatments of unknown efficacy", and in tandem treatments with no evidence could be removed even from "Potential treatments".

    I would hope that patients would assess the value of MEpedia in terms of its long-term aims, rather than criticise it at this early stage for not being everything it can be. It is but a young project. Many patients, including me, are working very hard to improve the content and it will, literally, take years to build the knowledge base into what it needs to be to serve our aims. My hope is that not too far into the future you can open a page like the mitochondria page and see a complete list of EVERY study on ME/CFS and mitochondrial function, read clear summaries of all the findings with clarity about what this may mean, ongoing unpublished research and explanations to help the reader understand. And I would also like to see, as has been suggested, information to help people assess the reliability of the study, especially to clearly state the disease definition used. Pages like that one are especially important as areas of active research, so that new findings can be added. Right now there is nowhere online where you can easily find that information in one place, and that is the aim of the project. I have so often had that experience when I ask myself things like "where was that danish study on quality of life?" or "I've lost track, how many Rituxan studies have been done? Are more ongoing?".

    MEpedia is a wiki, which is very, very different from all other online systems like blogs and article sites for the fact that ANYONE can edit a page (yes, without even signing in). All edits are reversible so despite this free-for-all it is a very safe and effective way of allowing disparate groups of people to contribute knowledge. So MEpedia is a community effort that only exists because patients contribute to it. There are no editors, no approvals, no structure at all, it's just patients (on their better days) coming in, and taking a bit of the valuable knowledge they have in their head and putting it into MEpedia, for the wider community to benefit from. So if you read an MEpedia page and think "well, this is not very good" then that is the page asking you, imploring you, to click edit, and fix it, as a gift to the community - add the study, fact or reference so it's easy for others to find in future. I so often see patients who have the most amazing personal collections of studies, charts, articles, quotes, interviews, paper clippings etc, but it's all scattered around and often held privately and by doing that, we reduce the value and prevent people using it. Unfortunately, in my view, our community has been a bit slow to seize these modern tools for knowledge sharing and making use of them. And I've come to believe that the wiki system (designed in the early 90s) could not have been designed better for ME patients if the inventors had tried - it allows patients to dip in and out as they please with no commitment required, no hours of operation, no management, no approvals, you just click Edit and type. MEpedia is not much more than 6months old and it is truly amazing to me how good some parts of it are given there's been no over-arching strategy and it has simply evolved and improved as various patients have quietly contributed towards it. Even if you disagree with the project aims or feel it hasn't progressed fast enough, I hope you can recognise the significant commitments that patients have made to it. Of course many pages need work, but that's the nature of a wiki.

    Something I have realised working on MEpedia is how crucial it is becoming not just for documenting the science, but also the history and collating facts, figures and resources for lobbying purposes. You suggest it exists only to document alternative health treatments and yet that is a tiny part of its purpose. The primers for journalists, doctors, carers and the public have evolved quickly, and are extensive. Information about research spending per patient, or research patterns historically are vital pieces of information for patients to have when they contact their political representatives. MEpedia is a toolset, for all of us, and by growing and improving it, we are arming patients with a much wider range of tools to argue their case, educate themselves and bring about change. MEpedia is a community resource, a shared brain for all our collective knowledge - about the research, the treatments, the scientists, the (horrible) history, the politics. The more I edit pages, the more powerfully this is hitting home for me - MEpedia is bringing together and collating all the key information in our community in a way that has never been done before. It will take time.

    Skippa says:
    "By the way, whilst we're on the subject, the whole homepage is a bit of a mess. What about a where to begin or start here section, with nice big links such as what is me? and perhaps even controversy."
    Please give us a chance, it is a huge project, absolutely massive and we need help, we cannot physically do everyone at once. I am approached several times a week by people telling me MEpedia needs improvement and can I make edits they suggest, but like everyone else contributor's time/energy are limited and where you see failures in specific areas, they are busy working on fixing things they found themselves in other areas. But I like your ideas about the home page and I would be very pleased if you could help us make it better, you are right it can be a lot better. This point you make about the home page is one I strongly agree with and it's something we've struggled with for some time. The reason the home page is huge and link-covered was to make it easy to see which pages had yet to be created (the red links) and yet as hundreds of pages have now been created there is less need for that. Initially MEpedia's home page was laid out to assist contributors, but now the pages are becoming more useful and trustworthy (not all, for sure) it must mature to better suit the needs of non-contributor visitors. One option that's been discussed is to follow a model a bit more like Wikipedia's home page and include higher-level sections highlighting certain content, which for MEpedia might include a section of pages on topical subjects (PACE, Ronald Davis, Robert Naviaux, for example) and then to make the various primers much more prominent, so that actually the home page is designed to guide the various types of visitor to the right place (researchers, doctors, journalists, politicians etc).

    MEpedia is a wiki, so it is never finished and always needs improving and is forever evolving. Every day patients are editing pages so daily it gets better, with people squirrelling away their knowledge into the shared knowledge. Everyone will see improvements needed to every page, and that is a reminder of how much there is left to do, and a sign of how much better it will be as it matures. This project is profoundly important to us in achieving our goals of increased understanding of the severity of disability and research funding so I encourage you to jump in and help drive it forward.

    Here are some pages that are a bit more where they should be in terms of content:
    http://me-pedia.org/wiki/PACE
    http://me-pedia.org/wiki/Mitochondria
    http://me-pedia.org/wiki/Rituximab

    For those who are interested in contributing and improving pages, the contributor forum is here http://my.meaction.net/local_chapters/mepedia I and others will do our best to help you get going. There's also an intro page for contributors here http://me-pedia.org/wiki/How_to_contribute If you want to give feedback on specific MEpedia pages, please do post to the contributors forum.

    Apologies for the long post (my brain is now duly fried) but I wanted to do my best to address the criticisms (some of which are absolutely fair), and explain hopefully more clearly why this project is so incredibly important to bring about change.
     
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  12. Kina

    Kina

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    Does 'criticism' not engender change? There are two types of criticism -- positive and negative. Positive criticism assists in making positive changes whereas negative criticism just serves to tear down something.

    I think that @A.B. has introduced some positive criticism that might be helpful in furthering this project regarding the direction MEpedia might go.
     
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  13. olliec

    olliec

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    I welcome all feedback, but it is hard to read such strong criticism (especially that the project is "harmful") when so many patients have made significant contributions and it is still less than a year old. As a community (open source, literally) project it is up to the wider community to move the project forward, and my own capacity limits prevent me from actioning all the suggestions we see. My own job list of improvements I'd like to make to MEpedia is several hundred items long so I share the frustration expressed here that there's so much more to do, but it's the nature of ambitious projects. MEAction created MEpedia and pays for its web hosting and management of the technology, but it's a tool that has been provided for all of us to use so we can collate and refine everything we know. I hope over time more patients will see how incredibly valuable it will become as we expand and grow the knowledge in it. Finding a study/article/chart/quote/etc should be quick and easy and we all need some efficiency gains to counterbalance our limits!
     
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  14. A.B.

    A.B. Senior Member

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    Thanks @olliec

    I suppose one could see my criticism as a criticism of the direction and goals.

    I don't see value in having a page on dark chocolate or mastic as potential treatments (just to name two). Do you see these as valuable? If so, why?

    For those curious, the treatment section http://me-pedia.org/wiki/Category:Potential_treatments
     
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  15. Esther12

    Esther12 Senior Member

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    Maybe it would be good to have an introduction to this list of 'potential treatments' which makes it clear that it includes implausible interventions with no evidence of efficacy?

    Also, if standards for inclusion are low, shouldn't CBT and GET be included? edit: to be fair, Exercise is there, I just looked under G, not E.

    Thanks to all those working on this. I think it's good to make room for harsh criticism, to try to improve things, but appreciate that it can be dispiriting to those working on a project. Providing useful resources about CFS is very difficult, and there's probably going to be plenty more harsh criticism to come as the project progresses... hopefully it will keep making MEpedia stronger.
     
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  16. JaimeS

    JaimeS Senior Member

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    Contribute to MEpedia to improve it.

    You are reluctant to edit a page to become more accurate because you fear that the page may not currently be accurate. o_O Certainly there are plenty of errors in Wikipedia at any given moment in time. This does not prevent users from fixing them.

    MEpedia is not run by one person. It's a group effort. If people want MEpedia to improve, the way to do that is to make contributions to its content. We do not direct it at #MEAction beyond mentioning pages that especially need attention because they are sparse or important to the conversation at this moment in time... and we encourage people to post there or add information in a more general way. We do not direct what information can or cannot appear.

    MEpedia is a huge project, and the more volunteers take a moment out of their day to make improvements, the more it will grow and the more useful it will be to the community.

    Re: cocoa -- I followed the link and there are eight studies cited, not a dead link. Really, MEpedia is just to gather information, not to produce value judgements about which treatments are best / most valid. The spirit of a wiki is to allow anyone to make contributions and allow the user to judge the content for themselves.

    MEpedia can use help to become better. It's very easy to stand back and wait for others to produce the content you want, but it doesn't produce results!
     
  17. A.B.

    A.B. Senior Member

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    What value do you see in having a page on cocoa as potential treatment?
     
  18. JaimeS

    JaimeS Senior Member

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    That's the point. I don't get to judge value and remove it if I don't personally find it valuable. I don't control the content that shows up. It's the effort of the entire community, not me simply because I write for #MEAction or Ollie because he does the same...
     
  19. JES

    JES Senior Member

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

    Evidence based is fundamental requirement for any medical treatment, or at least should be.
     
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  20. mfairma

    mfairma Senior Member

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    MEPedia, in my view, while promising in some respects, has been a bit of a quixotic endeavor in others. It offers most promise, I think, as a way to educate the broader community of patients about the basic biology, history, and sociopolitics of the disease, attempting to serve the same self-educational purpose as the Thirty Years of Disdain paper, but in a more accessible format. In its current form, it falls woefully short of advancing that goal. As a repository of links, it may be useful to patients, though as a deep source on treatments, it will be of diminishing utility as real treatments are developed, as A.B. noted (and, in my view, is of questionable value even now).

    The bigger problems, I think, are how to handle differences in judgment and differences in relative ability to parse complex ideas and communicate them in the ways demanded by the form. A democratic process seems poorly served to making the wiki what it could be. But then, there is the broader question of what its purpose is, whether the wiki is the best way to accomplish that purpose, and, if so, whether what is developing organically is accomplishing it.

    I realize that my judgment is harsh and 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.
     

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