SOC
Senior Member
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Madie - I really love this idea. A website for everyone.
I had an idea that would be tangential to this one that I discussed on another thread recently. We are starting to see patient organizations pulling together and working cohesively to get their message out at CFSAC. I think we are seeing positive movement here within the committee. Also, this committee seems to be more open than they have been historically, to interacting with advocacy groups. I think we need to leverage that.
What I would like to see is for every patient, support group, advocacy group, etc. to be plugged in to one cental place. We can all agree on at 80% of the issues before us. Let's use the power of our numbers to really speak and act as one voice on that 80%. I don't really care about the 20% right now, details can be worked out later, when we are much further down the road. As you are suggesting, it would not be a place to argue, it would only be a place to join together and to disseminate information - for example, petitions to sign, information on voting in contests to raise funds for our community. It needs to be a go-to site for all of us fighting for the same cause.
This could work if we had a clear set of goals stated at the website so that participation was a buy in or don't come arrangement. Otherwise we will be forever arguing about, for example, who gets to call what set of symptoms ME. IMO, these kinds of arguments are seriously fracturing our voice, so as SpecialK82 said, we would have to find a message/position for this proposed website that won't include arguing. I'm not sure we can achieve that.
But if we don't find that message/position that 80% of us agree with, the proposed website will just be anothaer one of many ME/CFS advocacy sites.
Perhaps we can start a new thread proposing some platform points, discuss it for a month or so and then put it up as a poll to see if we have at least 80% agreement here. Maybe after that we could run it by the main advocacy groups to see if we can get 80% agreement.
Does anybody want to start with a couple of issue positions that most of us will probably agree to?