The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Research Tools - organizing, prioritizing and cataloging

Discussion in 'Information and Resources' started by Garz, Jan 10, 2017.

  1. Garz

    Garz

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    Hello fellow sufferers and researchers,

    From what I can gather, many of you who use this forum are like me, keen researchers.
    Most seem to have had limited or no success through the conventional healthcare systems and have therefore chosen to take responsibility for their own health.
    To do this many embark on extensive reading and deep research to learn how best to progress towards better health in their particular case. This certainly presents challenges. Particularly in ME/CFS as:
    • the illness etiology is poorly understood at present,
    • there are almost as many theories as there are doctors/researchers
    • there are a large number of potential differential diagnoses that may need to be eliminated
    • there is a huge amount of published research in many different research areas that may be relevant
    • the scope soon becomes exceedingly large, and the network of ideas complex and interconnected
    • in addition the ME suffering researcher will have limited time and especially energy to pursue the work
    For example, an individual may need to keep track of multiple research ideas and directions,
    perhaps visit them each in enough detail to establish where on the priority order they should be positioned and then revert back to a former higher priority topic without losing your place or thoughts.

    In addition, while we all think and process information in slightly different ways, it strikes me that some visual overview of the entire project would be an invaluable aid in spotting patterns or less than obvious linkages that could represent a breakthrough for an individual.

    I have tried mind maps - these have good visibility when the scope is small but rapidly become too large to fit on a monitor and still see/read the text. But perhaps I am not getting the best from the tools
    I have also tried windows folder structures, MS excel tables and Chrome bookmarks but still feel i am somehow missing something better. Perhaps there is a software tool that is ideal for this out there or perhaps seasoned researchers have developed a methodology that works well

    I wonder if this challenge of how to collate, prioritize and organize research is something many of you have already come across, and I am interested if any of you kind souls would like to share the ways you find most helpful.

    Please post your preferred way with a few words as to why you like to do it like that
    Screenshots or such like would be fantastic.

    Wishing you all very good health.
    Ben

    Topics: research, organize, organisation, mind-map, mindmap, prioritization, differential diagnosis, software, folder structure, chart, diagram
     
    Last edited: Jan 12, 2017
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  2. joshualevy

    joshualevy Senior Member

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  3. Woolie

    Woolie Senior Member

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    Hi @Garz. I use Sente to organise my research papers. Each time you add a paper it records all the information about the journal, year, issue title, etc., and you can attach the actual pdf to it too. So you have a "directory" of all the research. The really good thing about Sente is that you can "tag" each paper according to what it is about, and you can use multiple tags.

    So for example, an article about neuroimgaing in patients with MECFS would go under the tags "neuroimaging" and "MECFS". So later, if you ask it for all papers with the tag "neuroimaging" it will come up, and likewise if you search for "MECFS". The tags can be hierachical too - so for example, you might have subtags under neuroimaging for fMRI, SPECT, volume analysis, structural MRI, and if you tag any paper with one of these it will also automatically acquire its parent tag too - "neuroimaging".

    Menedely works in a similar way, and I think Zotero too.

    For organising your own ideas or summaries, you could try something like Scrivener. Its for Macs, so not sure if there's an equivalent for PCs. Its designed for writers, and with it you can create a "storyboard" of ideas or summaries. Visually, they're like little notes you pin on a "board", and each one can deal with a different topic. You can move the notes around and reorganise them once you get a better idea of the relationships between the different ideas/summaries. The spatial aspect is nice.

    Let me know if you'd like any more information about either.
     
  4. Garz

    Garz

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    thanks for the replies and suggestions!

    the zotero type tool looks interesting - so will install that and have a bit of a play with it and see if i can use it - am sure it will be useful in some way - even if not perhaps in the sense of some visible map.

    I looked into scrivener too - watched the demo vids etc - they do do a windows version - that looks interesting too. If i was to plan to write a book or publish a paper of my own I can really see how that would help and i would definitely use something like that - but for the task i have in my mind it seems a little restricted in terms of the complexity i would need - and how much you can view at one time. Windows and notes just seem too small/limited

    The problem I am wrestling with is that for someone with a "CFS/ME- odd infectious disease" pattern of illness there are approx 100 potential differential diagnoses.
    We set about trying to figure out which one of these is most likely by reading research, comparing symptoms picture to that in the research, blood tests and other lab results, noting anomalies and agreement.
    But you can very quickly see that you will have some kind of matrix of 40 to 100 signs and symptoms/results multiplied by possibly 100 potential diagnoses - so potentially you need to fill something like 4,000 to 10,000 "values"

    A huge task and confirmation bias is a constant challenge - so its important to be methodical as possible (I am experimenting with such a matrix in MS excel format).

    The picture will build only gradually - and somehow the user will need to prioritize which direction they will commit their limited time and energy into first, second, etc. Such an effort needs the user to be able to track where they get up to in such a process so they can stop a line of research that seems to fall lower down the priority list for now. but know where they got to in that effort so they can pick it up again later if needed.

    I have met in person and read many forums where many, many people have struggled for decades with unexplained chronic illness under CFS/ME FM or other headings - and bounced from one quack to another - each time hoping this will be the answer for them - often spending tens of thousands of their life savings in hope of finding a solution - but with little success.

    I am analytical by nature so it appears to me( naturally :) ) a methodical evidence based approach to such a complex problem may be the best way forward.

    Am i crazy to try to approach the issue like this ?

    Is anyone else attempting similar approach ?

    How are other people here setting about it - in terms of organised methodology?
     
  5. PatJ

    PatJ far and free I gaze

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    You might find CMapTools helpful. It's based on concept maps which are similar to mind maps but more flexible, and linkable so you can create an overview map and click down into sub-maps for detail. You can also add other media types.

    It's free software and cross-platform.
     
  6. Woolie

    Woolie Senior Member

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    Thanks, @PatJ, really interesting software. Always a pleasure to have you here.

    @Garz, PatJ's post reminded me about your question. It sounds like your problem is really a database one. Have you thought of something like Microsoft Access? You can store a heck of a lot of data, and it has an interface that allows you to do a systematic search according to values in the database, or keywords or whatever. For example, you can do a combined search for all entries that include both the tags CFS and FND or such like.

    For info: https://www.microsoftstore.com/store/msusa/en_US/pdp/Access-2016/productID.323017400

    There might be better database management software out there these days. But I've used this in the past, and its pretty user friendly.
     
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  7. user9876

    user9876 Senior Member

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    Or something like MySql which is free and is a better database engine but has less of a graphical interface so requires more knowledge to work it.

    If you are on windows

    https://dev.mysql.com/downloads/installer/
     
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  8. PatJ

    PatJ far and free I gaze

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    If you've got some coding experience you could use a database as suggested, and output some of the info to Graphviz or a large scale graph viewer that allows for zooming into detail areas. You could also use something like PyZUI for the interface (example video).
     
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