Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Most effective treatments spreadsheet - tidied

Discussion in 'General Treatment' started by underdog, Apr 9, 2012.

  1. underdog

    underdog

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    https://docs.google.com/spreadsheet/ccc?key=0Asa09r5BszcvdFlOVU5TbGItNUU0RUJndVIybmMtUmc#gid=0

    Hi,
    I have thought of condensing into a spreadsheet people's experiences with effective treatments, which was started in another thread.
    It seems from that thread that there are treatments that help people really move forward and those that make illness or symptoms more manageable.
    I tried to structure the spread so that effective treatments are not viewed in isolation but link a bit with background and main health issues. This may help assess treatment success in context and give a better understanding of its potential.

    I would be grateful if anyone interested could fill the spread as much as possible. I believe it could give a very helpful view of treatments that actually improve people.

    It would be great if we could focus the spreadsheet as follows:
    - Please list "big movers" only, meaning those treatments that helped someone move up the PR activity rating by at least 1 level.
    - Please list one treatment for each row, for any "big mover".
    - Please add rows as appropriate in alphabetical order to make it easy to find people (assuming the spread will grow with data).

    I tried to pre-fill with data from the other thread for some respondents.
    I only did those posts that were easier for me to interpret and restructure so please have a look and amend where necessary.
    Also I reported just one of the treatments listed, assuming the one with the largest improvement was the main driver of a move up the activity scale.
    However, list any other that may have helped in moving up the scale any further.

    I'd really appreciate if anybody who has experienced an effective treatment can share their information in the spreadsheet for the benefit of all of us on this forum.
    Many thanks.

    PS: Anybody who has ideas for making the spreadsheet better please post it.
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    One thought and the reason I have not posted on this thread is that some of the treatments are synergistic, some build on ones before them--meaning to have success in one, you might have to do another treatment before hand.

    I am not sure how to fill out this spreadsheet as I am on a very helpful protocol but no one element really "stands" without the others, and some things (for instance appropriate testing) are necessary to screen to get an idea if certain treatments will work for you.

    If someone doesn't have a certain virus, taking a medication for it will not help them, while it may be very helpful to the person who has that virus.

    Also, when you say one line per treatment option, do you mean one block or to list them all in one block?

    Thanks,
    Sushi
     
  3. Xandoff

    Xandoff Michael

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    I agree with Sushi. We all live in one room school house and we are all at different places in treatment and in health. Designing a spread sheets for such a complex group of people is a thankless and difficult job. With that said I thank you for your input underdog. I realize I am not adding anything positive here except to highlight the difficulty of organizing this. The only advice I have to offer is to keep it simple Sam. KISS
     
  4. Nielk

    Nielk

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    Hi underdog,

    I think that this idea of this spreadsheet is great. I thank you for your time in putting it together. I agree that the simpler we keep it the better. I think everyone understands that there are so many variables that contribute to the successes or failures of different treatments. There is also as Sushi mentioned a big variance as to different PWCs specific problems. There must be a way that this van be added to the spreadsheet. In other words instead of saying B12 helped my overall health by 50%, One should be able to say because of my problem that showed up as ...... B12 helped me regain....... or something to that effect.
     
  5. ukxmrv

    ukxmrv Senior Member

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    I'm concerned about having a successful treatments spreadsheet that doesn't report on adverse and severe reactions to the same regimes or just the simple failures.

    A treatment may help (for example) one in a hundred and damage another twenty. The twenty go unreported here and I think it is dangerous to get people's hopes up by only reporting only the positive reactions. There may be many more causulties of any treatment and they should be reported as well so that anyone trying an experimental drug or regime has the full story.
     
  6. underdog

    underdog

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    Sushi,
    Your comments are perfectly valid, you're describing what happens in practice.
    Of course treatments are synergistic but if you can list the one or two that were the main improvers. You can mention the others in the comments column.
    The idea is to have a simplified overview of what moves people out of illness.

    Also, as you say, treatments are relevant in relation to specific issues arisen from testing.
    The spread is a compromise for the sake of simplicity. It could be more comprehensive and complex but I don't have the energy to do that.
    But it can be helpful if we for example see only some rough patterns coming out, like at present I see quite a few B12 as a driver.

    Nielk,
    The spread asks also for an improvement in the level of activity as described on this forum (0-bedridden constantly, 1-mostly bedridden etc.) as well as for the main symptoms.

    ukxmrv,
    I see your point. I had actually thought of integrating the aspects that you mention. Also a treatment, perfectly safe may help some but do nothing for many others, and so on. However, I couldn't think how to do it without making the whole exercise too complex and draining for me.
    Then I thought that in the end it's up to everyone of us to check side effects, reactions etc and whether a certain treatment may be helpful to us or not.
    Anyhow, I think we can at least add a further column for side effects and similar.
     
  7. underdog

    underdog

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    Triffid113,
    Thanks for filling in your treatments. I have taken the liberty of splitting the actual treatments from your comments and moved the comments to that column.
    I'd appreciate if you can also specify the degree of improvement in terms of the PR activity ratings for each so to give an idea to others on how you moved from 2 to your current 8 (which is quite remarkable).
     
  8. Hanna

    Hanna Senior Member

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    Well done Underdog!
     
  9. taniaaust1

    taniaaust1

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    ohhh **blushing** ive no idea what Ive just done to the spreadsheet (hopefully nothing but its now jammed up on my computer so i cant see it). It wasnt fitting on my computer screen (my own computer issue).

    And as where it said two top symptoms.. I tried to change that for me as the one listed there isnt one of my top two symptoms so thought it gave a false impression of the ME in my case but the treatment you'd listed for me WAS one which has helped me the most as previously stated. (so im confused if i should of left what it said or not... as I couldnt see the whole screen either..i dont really know what the rest of the page said).

    Appoligies if Ive stuffed up anything on the page (what I ended up trying to type appeared then all over the screen of my computer..so I dont know where it ended up). I think Im going to keep my hands off of that page for a while.
    (my worst two symptoms for past few months have been been the POTS and the insomnia but they are being quite hard to treat properly, so Im still trying to successfully fully treat them with drug experimenting).

    thanks for trying to put together a spread sheet.
     
  10. xrunner

    xrunner Senior Member

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    updated, thanks.
     
  11. Mark

    Mark Acting CEO

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    I'm creating a new version of this thread because the old one here got sidetracked and went off-topic. I'm coping across the on-topic posts from the original thread into this one...
     
  12. Patrick*

    Patrick* Formerly PWCalvin

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    Underdog,

    Thanks for doing this. While I had a very difficult time narrowing it down to only 2, I understand your reasons for limiting it. (in reality, I have about 6 top treatments that are very nearly tied, but I did my best to pick the two best). I revised my column of the spreadsheet to clarify a few things.

    I wasn't quite sure how to fill out columns H (Worst 2 symptoms) and M (improvement in worst 2 symptoms). In H, I filled out my worst two symptoms NOW (after treatment), but those have changed over time. So in column M, I was referring to improvement in old symptoms. So there's a slight disconnect between my entries for columns H and M.

    I hope you're able to get many, many more responses because I think this could be a very interesting and valuable document, especially if it gets more respondents.

    PWCalvin
     

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