As a slight sidenote (too ill to find the exact right thread) I currently have the whole select a fundraiser thing popping up on facebook at the moment. I'm guessing these are things where for example if someone does do it once a year then it might be small bits that do add up.
It would be nice to have some of these that we can select that also put things in layman's terms that are attractive to the layperson who doesn't really care about ME and is just ticking a box because they have a friend/someone they know and is clear enough in what it is that they will get it and won't decide to 'disapprove' and assume it is something that is too hard for them to work out what they are sponsoring - which is where the terms like DecodeME are really good to have on those kinds of things.
It is also a great 30sec chance to get across a project that is happenning, and just from a point of view of showing that ME/CFS can be looked at scientifically and isn't all those whatever ideas people might have in their heads about us.
It would also be nice to have things I could select as a fundraiser that don't necessarily 'out' me to all contacts as a pwme. I certainly won't be putting my own blurb next to things.
Given MEA has got itself sorted on there (and are also good in things like the Amazon one etc, I don't know which ones bring in cash or how it adds up) along with some others like Solve it would be good to see ones that I'd really like to be able to just click search on to sponsor popping up easily under terms like SequenceME, DecodeME, Fluge and MElla - in terms that will mean something for others who these days might know little about me and certainly won't spend much time at all bothering to find out more than something saying 'ME' in it and then potentially that meaning a donation goes to somewhere that currently is doign things I think are not really in the interests of pwme
If it is there I could perhaps know which of the more technical titles to tick, but I'm not sure that people who don't have ME as I've learned from observing them for too many years, won't think better of that in their aim to pick something (and big brands work for a reason) that is 'well that is ME too, so I've done my bit' if they don't immediately get what something is.
It would be nice to have some of these that we can select that also put things in layman's terms that are attractive to the layperson who doesn't really care about ME and is just ticking a box because they have a friend/someone they know and is clear enough in what it is that they will get it and won't decide to 'disapprove' and assume it is something that is too hard for them to work out what they are sponsoring - which is where the terms like DecodeME are really good to have on those kinds of things.
It is also a great 30sec chance to get across a project that is happenning, and just from a point of view of showing that ME/CFS can be looked at scientifically and isn't all those whatever ideas people might have in their heads about us.
It would also be nice to have things I could select as a fundraiser that don't necessarily 'out' me to all contacts as a pwme. I certainly won't be putting my own blurb next to things.
Given MEA has got itself sorted on there (and are also good in things like the Amazon one etc, I don't know which ones bring in cash or how it adds up) along with some others like Solve it would be good to see ones that I'd really like to be able to just click search on to sponsor popping up easily under terms like SequenceME, DecodeME, Fluge and MElla - in terms that will mean something for others who these days might know little about me and certainly won't spend much time at all bothering to find out more than something saying 'ME' in it and then potentially that meaning a donation goes to somewhere that currently is doign things I think are not really in the interests of pwme
If it is there I could perhaps know which of the more technical titles to tick, but I'm not sure that people who don't have ME as I've learned from observing them for too many years, won't think better of that in their aim to pick something (and big brands work for a reason) that is 'well that is ME too, so I've done my bit' if they don't immediately get what something is.