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Jen Brea $100,000 crowdfund for 2018 #MEAction activities
- Thread starter Sasha
- Start date
Ravn
Senior Member (Voting Rights)
There really should be a limit to how many serious health problems one person has to suffer! Wishing you a speedy and complication-free recovery from your operation @JenB.
A couple of thoughts for when you're back on deck on the Indiegogo, to consider for any future campaigns.
I had a good chuckle at the 'dangerous activist' blanket but feedback from some healthy people I tried to nudge – ok: bully - into donating was that they found the rewards too strongly ME-themed or else they didn't really want any 'stuff' at all. Embarrassingly neither they nor I noticed any straight donation option (only found out about it here, thanks @Gecko) so maybe make this option more visible in any future campaigns?
I asked what sort of rewards would have been more attractive (to healthy people). The common thread in the answers was either no ME references at all, or just very discreet ones. Like plain pillowcases with just a narrow edging with the Rest/Unrest motif. Tea towels, coffee keep cups and reusable shopping bags with similarly discreet motifs were other suggestions.
Alternatively items without any ME motifs at all but something many ME patients would use, and that healthy people could use, too, e.g. bed socks, sleep masks, ear plugs, PJs, etc. Another point made was quality. For example organic cotton would be more attractive than cheap synthetics so we don't poison the planet while trying to fix ourselves. Fair point.
A slightly different idea was playing on the theme of shoes, more precisely jandals (or flip flops or whatever people call them in other countries) printed with the names of ME sufferers. Not sure of the practicalities but an interesting idea.
Finally some 'non-stuff' ideas. Not overly practical but maybe with some twisting they could be made to work, or spark off some more realistic ideas. So for what it's worth:
One suggestion was to let a small percentage of the donation go to sponsoring an ME-affected artist. This could be to produce some digital art (not ME-themed) that the donor could choose – or not – to print out or download. Or it could go to pay for a small piece of a larger public art work (ME-themed, possibly digital).
Another suggestion was to create a sort of memorial garden or forest with one shrub or tree planted for each ME patient, not individually named, just based on estimated numbers of sufferers. The person suggesting this was rather surprised when told how big the resulting forest would be. They'd thought in tens of thousands, not in tens of millions.
On that note, the other feedback was that people were only considering donating as a personal favour to me. They thought of ME as an obscure cause they wouldn't normally support - which just shows how necessary your work is!
A couple of thoughts for when you're back on deck on the Indiegogo, to consider for any future campaigns.
I had a good chuckle at the 'dangerous activist' blanket but feedback from some healthy people I tried to nudge – ok: bully - into donating was that they found the rewards too strongly ME-themed or else they didn't really want any 'stuff' at all. Embarrassingly neither they nor I noticed any straight donation option (only found out about it here, thanks @Gecko) so maybe make this option more visible in any future campaigns?
I asked what sort of rewards would have been more attractive (to healthy people). The common thread in the answers was either no ME references at all, or just very discreet ones. Like plain pillowcases with just a narrow edging with the Rest/Unrest motif. Tea towels, coffee keep cups and reusable shopping bags with similarly discreet motifs were other suggestions.
Alternatively items without any ME motifs at all but something many ME patients would use, and that healthy people could use, too, e.g. bed socks, sleep masks, ear plugs, PJs, etc. Another point made was quality. For example organic cotton would be more attractive than cheap synthetics so we don't poison the planet while trying to fix ourselves. Fair point.
A slightly different idea was playing on the theme of shoes, more precisely jandals (or flip flops or whatever people call them in other countries) printed with the names of ME sufferers. Not sure of the practicalities but an interesting idea.
Finally some 'non-stuff' ideas. Not overly practical but maybe with some twisting they could be made to work, or spark off some more realistic ideas. So for what it's worth:
One suggestion was to let a small percentage of the donation go to sponsoring an ME-affected artist. This could be to produce some digital art (not ME-themed) that the donor could choose – or not – to print out or download. Or it could go to pay for a small piece of a larger public art work (ME-themed, possibly digital).
Another suggestion was to create a sort of memorial garden or forest with one shrub or tree planted for each ME patient, not individually named, just based on estimated numbers of sufferers. The person suggesting this was rather surprised when told how big the resulting forest would be. They'd thought in tens of thousands, not in tens of millions.
On that note, the other feedback was that people were only considering donating as a personal favour to me. They thought of ME as an obscure cause they wouldn't normally support - which just shows how necessary your work is!
andypants
Senior Member (Voting Rights)
Joh
Senior Member (Voting Rights)
I also see it in German.
Wouldn't mind Andy visiting the Robert Koch Institute, DEGAM and AWMF to explain ME.
ETA: "So who of you wrote the guideline tiredness?"
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Sasha
Senior Member (Voting Rights)
Hi Jen - I hope you're recovering well from your surgery and are taking it easy. Sorry it has taken me this long to respond to your posts, and there's no need at all for you to respond to these (especially while you're recuperating), but here goes...
I think that saying the kind of thing that you've said here will change it.
Maybe this is a generational thing but I'm probably not the only patient who hears 'online megaphone' when you say 'platform'. I certainly don't think of a platform as consisting of a community or of being an idea. I can't see how a company or a social movement could be a platform. To me, a platform is in effect just a giant soapbox that people who are interested in you keep an eye on.
It sounds as though my understanding of this is different from yours (and you're the expert in this area so I expect I'm wrong!) but if a lot of us have that flawed understanding then if you say, 'Donate so we can build up our platform', a lot of us will be hearing exactly what you don't want us to hear: 'Donate so we can get more tubes and pipes'. I wonder if similar misunderstandings about other 'new tech' terms are getting the way of people understanding what you're doing with #MEA
This is very inspiring and the sort of thing that would get people to see the value of donating, if you can go into it a bit.
I hope there might be some intermediate level of communication between a tweet and a three-hour convo that would do it, or at least give an indication. I wonder if it's one of those situations where the perfect is the enemy of the good: where you don't have to do the whole job of laying out the entire plan to get people to see that there is a plan, and that it's worth supporting.
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I think that saying the kind of thing that you've said here will change it.
Maybe this is a generational thing but I'm probably not the only patient who hears 'online megaphone' when you say 'platform'. I certainly don't think of a platform as consisting of a community or of being an idea. I can't see how a company or a social movement could be a platform. To me, a platform is in effect just a giant soapbox that people who are interested in you keep an eye on.
It sounds as though my understanding of this is different from yours (and you're the expert in this area so I expect I'm wrong!) but if a lot of us have that flawed understanding then if you say, 'Donate so we can build up our platform', a lot of us will be hearing exactly what you don't want us to hear: 'Donate so we can get more tubes and pipes'. I wonder if similar misunderstandings about other 'new tech' terms are getting the way of people understanding what you're doing with #MEA
This is very inspiring and the sort of thing that would get people to see the value of donating, if you can go into it a bit.
I hope there might be some intermediate level of communication between a tweet and a three-hour convo that would do it, or at least give an indication. I wonder if it's one of those situations where the perfect is the enemy of the good: where you don't have to do the whole job of laying out the entire plan to get people to see that there is a plan, and that it's worth supporting.
.
Andy
Retired committee member
Rick Sanchez
Senior Member (Voting Rights)
Fund-raising is an art in it self and the amount of money raised doesn't correlate to the quality of work of a given charitable organization. I think we all have heard of multiple charitable organizations that are great at raising money, but are basically just squandering it.
I believe in what you are doing, and I think almost everyone would agree that MEaction has done an incredible job. I don't think I know many ME/CFS patients that have not heard of #Millionsmissing, and I have been really impressed by how the campaign has grown just over the last year when I started getting involved with the ME/CFS community.
You sometimes seem as if you feel bad / guilty for asking ME/CFS patients to donate, as if you feel like ME/CFS patients already have enough hardships in their life, and you feel terrible for asking them to give what little they have to the campaign.
Don't.
We all know that what really matters is getting that NIH funding. The 15 million dollars we receive annually is nowhere near enough to solve this illness, no matter how many private donations come through for ME/CFS research. Everyone, including the NHS knows that funding isn't always distributed fairly or rationally. NHS funding is essentially partly a popularity contest. The more awareness / pressure patients are able to apply, the more funding, it's that simple. It's great that we have a lot of organizations which are raising money for ME/CFS research, but the awkward reality that patients have to face is that if we want to see some sort of decent treatment in our lifetime, what we need is that 100 million dollar++ yearly funding from the NIH, and the only way we will get that funding is by doing more advocacy and making more noise, which is EXACTLY the sort of stuff MEaction is doing.
I know you want to use your limited time and energy on actual work, not ''wasting'' it asking sick patients for their money. But fund-raising is incredibly important, just try to imagine the amount of work you would be able to do if you could double or triple the amount of money raised. Money that MEaction definitely deserves.
So my my main tip is to see fund-raising in itself as an art to be mastered, and something to focus more energy on. Because MEaction honestly deserves A LOT more money than you are currently raising.
Really hope you recover well by the way Jen!! Remember to take care of your self
!!!
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Andy
Retired committee member