Poll: IOM study - for or against?

[Firestormm]

I know - if we are all for changing voting options after people have voted how about:

"I don't especially like the way in which this all came about, but I do think given the current state of science and knowledge about this condition, the CCC is probably the best of a bad bunch. So in that at least I agree with the so-called 'experts'. However, I think the IOM and the experienced clinicians on the panel, together with those that will present and contribute to the evidence review, are to be supported. It is high time that Fukuda was replaced with a much more realistic definition, and that CFS ceased to exist and be used as a name for this disease. It is my hope that one recommendation from the panel with be to replace CFS with ME."

And so say all of us

 

[golden]

That option needs to be broken up into easily readable chunks firestormm.


I am not abstaining, but cannot vote.

Two ideas were merged into one option.

*to oppose the contract
*to support the CCC


Finally, why would people who support the contract not be saying so? it seems perfectly OK to me if you want to support it.


Best of Luck with it all everyone

 

[caledonia]

3000 people signed one of the petitions that Susan brought to Washington. 3000 signed the other petition. You would have to compare them to see if there are 6000 unique signatures, or if the same people signed both - I know I did.

So if you conservatively estimate that 3000 unique people signed the petitions, then you have to know stats on how many ME patients are online.

Phoenix Rising has 8600 members, with 200-300 online at any one time.
MECFS Forums has 6800 members with around 100 online at any one time.

There is likely some overlap with both forums. I have accounts on both.
If you conservatively estimate that there is a 50% overlap, then that makes 7700 unique individuals.

I suppose you could throw ProHealth into the mix, but I view that as primarily an FM forum (I have an account there too.) Those patients would be less likely to be interested in an ME/CFS problem, so I would leave them out of the estimate.

If 3000 out of 7700 signed the petition, that's a 39% response rate, which is just remarkable.

If you run the numbers the other way and don't try to estimate unique signatures, it looks like this:

6000 signed the petitions with 8600+6800=15400 ME patients online.
6000 divided by 15400 = 39%, again a remarkable result

Usually you're lucky if you can get a 2%-10% response rate on petitions or letter sending campaigns. We got, conservatively, four times that.

For the poll on this post, 60 out of, say, conservatively, 300 people who regularly visit is a 20% response rate. Still remarkable.

Good polling practices indicate if you can get a 10% response rate from your sample, then that can be successfully extrapolated to reflect the opinion of everybody. This is how PEW and the other polling places do it.

So since we have more than 10% on the poll, I would conclude that 90% of the patients oppose the IOM contract, and that a large percent are so fired up about it, they're willing to sign petitions or take further actions to oppose it.