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.
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.
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