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Should we have a poll on resistant starch?

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Sasha, Sep 1, 2014.

  1. Sasha

    Sasha Fine, thank you

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    I'm sure a lot of you will have seen Prof. Jonathan Edwards's (UK rituximab trial) poll on thyroid test results for a sample of 100 members of PR (and if you've recently posted on the forums he'd like you to take part - see that first post to see if your name is on his list):

    http://forums.phoenixrising.me/inde...r-100-randomly-sampled-pr-contributors.32231/

    I've been thinking for a long time that we should have a poll of the usefulness or otherwise of resistant starch (RS) for ME.

    Last time I counted there were over 50 people on the main thread on resistant starch. Not all have ME and not all had tried RS but there are still a lot of PWME here who have tried RS. I think it would be useful to get at least some rough and ready data on whether it's a helpful intervention.

    Polls on PR only allow a single question so if we want (eventually) to be more sophisticated we'd need either someone willing to collate a lot of data and not to use our poll mechanism, or to use something like Survey Monkey.

    For now, I want to get a sense of whether there's interest in doing such a poll and if so, what the question and response options should be.

    For it to work, we'd need as many people as possible on the main RS thread to respond, even if it's only to say that they don't have ME or haven't tried RS and so shouldn't be counted. That's because it's important to know our actual sample size of PWME so that we know what the denominator should be for our outcome rates.

    So, good idea, bad idea?

    In the next post, I'll suggest a question and some responses to get the discussion going.
    Last edited: Sep 1, 2014
  2. Sasha

    Sasha Fine, thank you

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    How about:

    Q: If you have tried resistant starch for at least three months, how has it affected your ME?

    • I don't have ME and/or I haven't tried RS for three months
    • I've used RS only and my ME has improved
    • I've used RS only and my ME has stayed the same
    • I've used RS only and my ME has got worse
    • I've used RS and other prebiotics and/or probiotics and my ME has improved
    • I've used RS and other prebiotics and/or probiotics and my ME has stayed the same
    • I've used RS and other prebiotics and/or probiotics and my ME has improved
    • I've used RS but also new interventions other than prebiotics or probiotics

    There will need to be some introductory text, of course, and I expect to have to tag everyone on the RS thread.

    Obviously, the above is designed to find how many PWME have tried RS or RS plus pre/probiotics for at least three months and of those, to find how many have improved, stayed the same or got worse. It's also intended to let people o the main thread respond so that we know for sure that they shouldn't be included in the analysis group and are not merely non-responders, and it aims to exclude people who added other interventions that would mess up the data (including me, sadly).

    Thoughts?

    Remember, it's to get rough and ready data to show if something more sophisticated is warranted. It shouldn't be so long and involved that it will put people off. I wouldn't want to go much beyond 8 responses (not sure if there's a maximum possible on PR polls).
    Last edited: Sep 1, 2014
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  3. Hip

    Hip Senior Member

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    I think a poll is a good idea. Though I understand that halfway through the long thread on resistant starch, the suggestion was to change to larch arabinogalactans rather than resistant starch.

    So in that thread there may be some people taking RS, and others using larch arabinogalactans. So you might want to include both in the poll, as separate questions.


    Another issue is that alongside resistant starch / larch arabinogalactans, many people were also taking the potent probiotic Prescript-Assist, which is a soil based organism probiotic.

    Since Prescript-Assist is a uniquely powerful probiotic, it might have played a significant role any benefits the resistant starch / larch arabinogalactans + prescript assist protocol may have provided. So although this complicates things further, you might need to include more questions to cover cases where Prescript-Assist was used, and where it was not used.
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  4. jstefl

    jstefl Senior Member

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    I have been using RS for about 8 months now, and I have no idea of how I would answer a poll.

    Some symptoms have improved, and others have stayed the same. My stomach is much better, but my energy level is the same. I have tried using at least four different probiotics, and I have stopped the probiotics for trial periods. I am using PS, LAG, and Heathers Tummy fiber, and am looking at trying others.

    I am very glad that I have tried the RS, but I don't know how I could answer a poll in a meaningful way. I see RS as a trial and error procedure that is most likely different for each user. For instance, I am taking a low dose of doxycycline twice a day. I tried stopping the doxycycline, and immediately became much worse.

    I am hopeful that there is more improvement to come, so I am not ready to decide just how successful my RS journey is. I just don't see how a poll could provide any meaningful information.

    John
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  5. Kati

    Kati Patient in training

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    n think you need to have an answer that says "what the heck is resistant starch", because that's where I fit.
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  6. bel canto

    bel canto Senior Member

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    A very simplified top-level poll would be to (1) ask whether people had tried RS- to list that and/or the other things noted above, and
    (2) whether results were overall favorable and
    (3) whether they thought it was worthwhile to try, regardless of the outcome.
    It would give us at least a general idea of what's happening.
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  7. jepps

    jepps

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    RS is very powerful, but should be combined with fibres, fermented nutrition or probiotics, and a good diet. Maybe you could integrate questions, if fermented nutritions, LAG, fibres, diet improved the effect of RS.
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  8. Sasha

    Sasha Fine, thank you

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    Wondering if the inter
    Hi @Kati - the poll is mainly for people who have been experimenting with resistant starch and I was intending to reach them through the main thread on resistant starch:

    http://forums.phoenixrising.me/inde...ge-is-it-the-key-weve-been-looking-for.26976/

    If you haven't been following that thread (and a lot of people on the forum might not have been) you won't understand what the poll is about but that's OK - you wouldn't be in the sample, which will be a list of people who have posted on that thread.
  9. Sasha

    Sasha Fine, thank you

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    I missed that - though I've seen LAG came up a lot. Thanks!

    In any PR poll, I can only ask one question, but I can provide up to 20 (just checked) response options and can also allow more than one response.

    Another option is to run more than one poll but then I think we'll have drop-outs and it will just confuse the heck out of people.

    Thanks again - I also hadn't thought of PA was uniquely powerful (though it smashed me up and I had to stop it!).

    I'll wait and see if others want to add other specific interventions. That's already too many combos to tie with the three outcome options, though:

    RS only
    PA only
    LAG only
    RS + LAG
    RS + LAG + PA
    RS +
    RS + PA
    LAG + PA
    RS + pre/probiotics other than LAG or PA (assuming our focus is on RS but maybe it isn't).

    Hmmm...
  10. Sasha

    Sasha Fine, thank you

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    Hi John - I think you've put your finger on the difficulty of a crude poll like this - people are tailoring their interventions and trying all sorts of stuff. It's going to be a blunt instrument to indicate whether some more sophisticated work is warranted.

    In terms of your outcome, if some symptoms have improved and others have stayed the same, wouldn't you say that's an overall improvement? It's interesting that you don't, and I'm wondering if that's because you see your gut problems and your ME as two separate things. Many people might, which suggests a need to separate those outcomes (argh, getting complicated!). Maybe I need to specify that initially I'm not counting gut issues... but then for many, they're a part of the ME picture...

    Prof Edwards provided a list of questions and asked people to post their responses or PM him (in fact he requested that many people PM him so that people couldn't infer individual responses from the whole, for privacy reasons). I'd also want to protect people's privacy (the auto-poll can be set to anonymise responses). Not everyone wants their situation known (some might not even want to say they have ME).
  11. Sasha

    Sasha Fine, thank you

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    Hmmm...

    Stepping back a bit.

    People have been experimenting with a lot of stuff. Maybe no-one has been using purely RS without the other potentially powerful players. We need to think about our question.

    Do we want to know whether resistant starch has a good outcome? Do we assume that LAG and PA are major players and so we should also focus on them? Or do we want to know whether tackling your gut with all sorts of stuff that may or may not include any of these three and where everyone is tailoring their own therapy has a good outcome?

    There are a lot of confounders here (i.e. lots of variables that will make it hard to identify which is having an effect).

    Just thinking out loud at the moment. @Ripley, @Vegas - any opinions?
  12. jepps

    jepps

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    The difficulty is that we cannot see RS alone. RS developpes its full power in combination with fermented food and/or the right probiotics, and the right diet. With this combination it´s very powerful, as it can contribute to the healing of the intestine, better metabolism and better detoxification.

    If somebody takes RS alone, and votes, and has no effect, than this could falsify the result. In my opinion it´s better to vote for a package, which includes RS.

    Maybe RS is enough, if somebody has slightly gut disease. But with CFS and ME one needs more for gut healing. But I can be wrong.
    Last edited: Sep 2, 2014
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  13. Sasha

    Sasha Fine, thank you

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    Maybe the intervention as people are using it is too complex for a poll to be helpful. That's certainly a possibility. If all we do is come up with a result that a bunch of people have improved using a whole load of variations on different combinations of pre- and probiotics, we won't have established anything very useful.
  14. Sidereal

    Sidereal Senior Member

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    I'm not sure how a poll would work @Sasha though I agree it would be very useful to get some quantitative feedback on this. I don't know if most people posting on that thread would be able to disentangle the effect of RS from all the other prebiotics (larch, inulin, FOS, GOS, chitin etc.) and probiotics we've experimented with. I wonder how many people took only RS to try to modify the gut. As @jepps said, maybe someone with mild problems like bad digestion could benefit from RS only but for ME/CFS you're going to have to do much more than that.
  15. Sasha

    Sasha Fine, thank you

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    I'm not sure about that, though it's a possibility. RS increases butyrate production (?) which affects the immune system - I don't think its effects are claimed to be restricted to obvious gut issues only.

    I'm wondering whether many people started on RS, saw some improvement, and then started adding things in. If so, it might be possible just to focus on that early stage but then there would need to be some thought given to what length of time is a fair test for RS to show some effects. One month? Two months?
  16. Aileen

    Aileen Senior Member

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    I'm another one using a bunch of things off both the RS thread and probiotics. I agree with the comments above.

    Maybe as a first step we should simply ask what people are trying. Forget about the outcome. Just who is doing what, and it what combinations. Can we have a poll where we can ask:

    Which of the following have you tried either alone or in combination -- PS, LAG, FOS, P-A, Align etc and have people simply check off all that apply?

    After that, we can do a second poll on responses based on the results. I guess I am trying to say use this as a screening questionnaire.
  17. Sasha

    Sasha Fine, thank you

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    That's a possibility - simply list all the interventions (we can list up to 20) and see if a large enough number are doing something simple enough. But there's really going to be no value at all in doing a poll if a substantial number aren't doing the same intervention and that's beginning to look less and less likely.

    Must admit, I'm starting to think that this isn't the greatest idea I've ever had.
  18. Sidereal

    Sidereal Senior Member

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    True but it appears from reading comments from people who have had stool testing that some of us are totally lacking certain beneficial bacteria like bifidos. This is why I believe that just providing prebiotics may not be enough; if you are missing key commensal species you may not ultimately be able to turn things around unless you can repopulate the gut with the right stuff.
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  19. Aileen

    Aileen Senior Member

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    No, I do think it is a good idea to try to find out what out of this area of treatment is helping people. I have certainly been wondering as I am sure others have as well.

    It is just that it is so freakin' complicated!! o_O Just once, I would like something to be simple and straightforward.

    Even if we find that not many are doing a specific intervention or using a particular product that may be helpful. Why??? Because then we can ask "Why did you not try x?"

    I personally have found that RS thread so long and complicated that I forget about parts of it. Some of those parts go into great detail about a certain substance but if you don't remember it and can't find it to re-read it, you won't try it.

    Maybe we will list certain things and people will ask what that item is or why do you use it with such and such. Then, we can start new threads that hone in on those topics. Smaller chunks of info to make it more manageable.

    Later we can see how those items are working for people. We may get to the survey you had in mind, it'll just take a year or so to get there.:rolleyes: You know, ME speed! :p
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  20. Sasha

    Sasha Fine, thank you

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    Thanks for trying to renew my flagging enthusiasm, @Aileen! I think that the poll as I had conceived of it is dead in the water, though. The interventions are going to be too varied for anything useful to come out of this.

    The PR poll mechanism would be rather unhelpful for what you're (I think) suggesting in that people can check multiple responses to "What are you taking" but you only then get out as data how many people are taking each thing. You lose the linked data on how people are combining each substance.

    I think I'll call it a day on this one. If anyone wants to pick up the gauntlet for some kind of poll, though, be my guest - it might be better to start a new thread, though, depending on what it is.

    :ill:

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