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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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The BIG CHASE: funding US ME/CFS non-profits

Discussion in 'Action Alerts and Advocacy' started by Frank, Dec 1, 2010.

  1. WillowJ

    WillowJ Senior Member

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  2. anncavan

    anncavan

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    Hi all,
    Just a heads up, Dr. Lerner's foundation does nit meet the $1-10 million requirement. Not sure how it was included. Thanks to WillowJ for checking with me!
    Ann
    (Lerner patient and foundation volunteer)
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I'll change my privacy settings so that anything I place on their wall will be viewed by all their friends and as many people as possible. While I keep my no. of friends small, the young relatives have hundreds of friends. Unfortunately, not too many of my older relatives are on Facebook.

    How does a person do this? Perhaps a thread should be started just for the "mechanics" of Facebook and perhaps another for wording to post on Facebook soliciting votes? Sorry, I get lots of email and only have so much time, with work etc.., so I need simplified protocol to help get more votes!

    GG

    PS If someone could email me simple directions, that would be helpful also, since this thread is getting to be very long with many posts everyday!
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I can understand people not giving for research. I barely give anything. I don't have enough money to take care of myself and most of us are in that situation. I support WPI, but honestly, giving our own last dimes to research now isn't that compelling an idea to me. It usually takes $Billions to make substantial headway on research on a disease. By the time we get to tens of millions we'll all be homeless if we're all giving away our rent money. What we really need is for NIH to do it's job and actually fund the disease in the $ hundreds of millions every year. And we need healthy people to contribute most of the private money.

    So we need to reach out to healthy people and most of all contribute to effective advocacy orgs who will use the thousands we give them to get potentially hundreds of millions in NIH money doled out. Too bad there are not any really obvious candidates for advocacy orgs to give money to. Hopefully the new WPI advocacy org- Aninda, or whatever it's called, will be that one.

    Anyway, re the contest, I think the fact that WPI and CAA are almost certainly going to get to round 2 even if they don't get one more vote, is the reason people aren't getting more fired up to vote. I think they will in the second round when so much cash is on the line. I for one will go ballistic contacting everyone in my email address book and all friends/contacts on social networks as I sure we all will. So, I wouldn't get too frustrated yet.

    But I think it is good to keep brainstorming. Anyone have any more creative ideas on how to get those reluctant 'friends' to vote? I was thinking of doing some kind of 'contest' or gimmick among my friends to create more interest. say, if wpi and caa both place in top three (or five or whatever) then whoever of my friends votes and reports back a list of 20 of their friends who voted get to split $1 or 2K that i will give to them when I get better! or if they win I will do some stunt like shave my hair into a mohawk and dye it green or something. Anyone have any good/ fun/ funny stunts I could do or any other creative ideas on getting votes?

    Who knows about advertising and marketing and can give us a good idea on really breaking thru the clutter and getting people to actually vote?

    More rambling: I think pretty much every facebook app makes you give them access to your friend list. I think they usually just use it to "proposition" you every so often to invite your friends to sign up for the app, usually by rewarding you somehow (like giving you points in a game app). Everyone (including me) signs up for every dumb game like mafia wars even though they want your 'friend list' and info. people complain about it but i've never really heard of people refusing to use apps because of this. So I wonder why people would care in this situation. Maybe because they're just signing up for FB and aren't familiar with it?

    You can opt to not give fb (or hide it from view if you do give it to them) your phone number and address (and hide your email) I'm pretty sure, so I think you can limit what the apps find out to just who your friends are. Is that right? Does anyone know more about this stuff off-hand? if it's just who your friends are, I don't think it's that big a deal, considering we're trying to get hundreds of thousands of dollars. Alright; I'm done blabbering.
  5. WillowJ

    WillowJ Senior Member

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    sorry, I was chit-chatting here

    To change your facebook settings for your posts, go to your own profile page and look in the top-right corner for the "Account" link with the drop-down arrow next to it. Click there (I don't think you have to hit the arrow; the Account part should be fine) and select "Privacy Settings"

    A new screen will load. Look for the part with the lock icon that says, "Sharing on Facebook". Hidden near the bottom of that section in small blue print is a link with a pencil icon that says, "customize settings". Click this link.

    A new screen will load. Change "posts by me" to "Friends of Friends" and your relatives' friends will be able to see your posts, if your relatives like or comment on them (or the friend sees your name on one of your relatives' walls and clicks through to your profile), or if you tag your relatives or post on their walls.

    While you are on this screen, check your other settings, because Facebook has this annoying and intrusive habit of creating new features and opting you in to them.

    Now, find the link at the top left to go "back to privacy".

    You will return to the previous screen.

    At the bottom left, find the link under Apps and Websites to "edit your settings" and click on that.

    A new page will load. Ensure that game and app activity is also set to "friends of friends" so that your Chase posts will be available to friends of friends. Check your other settings while you're there.

    If you want to change these back after the promotion, bookmark this post or email it to yourself so you can find the instructions again (unless you will remember how, after doing it once). Of course, Facebook might change how you get to these again. If so, ask again and someone will help sort it out.
  6. Dolphin

    Dolphin Senior Member

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    RE: people donating to research.
    I did say I accept some people have little or no money. But I see people spending tens of thousands on their illness across their illness not giving anything (from what I can make out). They may think they have no money and they may indeed have less money than when they were working. But it looks to me than many do have some money. Anyway, as I say, more are giving now (through the WPI) than have been in the past. But I still reckon that around the world, a lot more could be raised. With so many million affected, there is potential for a lot to be raised. And research doesn't have to be a cure to be useful.

    I agree that healthy people could contribute a lot either through donating themselves and/or fundraising (for example). But I'm not sure how focused a lot of people are on encouraging people they know to fundraise, etc. Perhaps there is a bit more of a focus now with the WPI.

    Anyway, I was just saying this in the context of a lot not taking part in this competition which costs them nothing financially except a very small amount of effort. Last year, PANDORA only just made it with 1600 votes which included some bonus votes (i.e. less than 1600 voted). And they cover lots of conditions. The enthusiasm of the WPI supporters this year has been great.
  7. Tuha

    Tuha Senior Member

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    I have the same impression. The problem of these discussions is that always only the patients who have really problem with money follow these discussions and they are touched even if you say 100 times that its not about them. I now some patients and almost noone support research or other ME/ cfs activities. A lot of them could at least send some money but if you try to encourage them, they say -"we dont have enough money". Then you are in a coffe and they take the most expensive one....But I think its in generelly - the people dont like to leave their money. I can tell you one example - I was working on a ministery and on the end of the year everyone got a premie 1000 EUR. We were in a pub with my 15 collegues and we were talking about humanity and everyone had a lot of words...I was sometimes working for a NGO which is really famous in my country and everyone like it. So next day I just said to my collegues - here is a bottle, if you want, put there some money and i will send it to the organisation - do you know how much money was there on the end of the day? 5 EUR - so 15 people got 15 000 EUR, it was christmas time and they were just able to donate 5 EUR.
    Someone wrote it here that research needs billions USD to move - I agree and also dont agree. Look at WPI - if they will confirm XMRV, they were able just with 3 mil. USD do such a big step - sometimes you dont need so much to move.
    I think we have to start to understand that we have to take responsibility to our hands but I think we are still waiting for something. I think that its disappointing that only 2300 voted for WPI - if we will say that in average every patient brought 3 friends to vote - there are only 600 patients who voted. there was such a big campaign and publicity, the people contacted so many cfs organisations, forums, support group, there are even tradiction to other languages..... We are talking about at least 17 mil. patients - ok, there is a big % who dont know the diagnose, some dont have any energeny - but I think there is still huge amount of some millions people who could support ME/ cfs activities. somewhere is a mistake.
    i understand the people are desperate - but for example with that "What have you done for me today" campaig last year we could see that some activities can work - that activity joined maybe a bit more than 1000 people. i think everything need better coordination and patients have to start to understand that they have to join me/cfs activities if they are able
  8. Dolphin

    Dolphin Senior Member

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    Good points Tuha. Like you say, there may be less than a lot less than thousand people with ME/CFS/families with ME/CFS who have actually voted for the WPI because of people bringing in other people of one sort or another.

    I don't think it was plugged: the CAA have made a short video for the competition: http://www.youtube.com/watch?v=NpbWknMYw6s
  9. Dolphin

    Dolphin Senior Member

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    (Junk)

    Weird (suspicious?) voting:
    Arcadia Educational Foundation were 2 votes ahead of the CAA last night on the leaderboard; in the next leaderboard, this morning, they are 290 ahead of them i.e. they got a large amount of votes for them in a short space of time (I think it might have been 305 but not definite). However, since the last leaderboard was put up, over 6 hours ago, they have only got 2 more votes (not 2 more than the CAA, just 2 more votes). Perhaps it is to do with school hours. Anyway, unlikely to make much of a difference in round 1.
  10. Dolphin

    Dolphin Senior Member

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  11. Dolphin

    Dolphin Senior Member

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    (Junk Junk)

    I was just wondering whether there would be a curve that would fit the votes.
    This doesn't show much but first I started looking at the bottom of each page:

    20th: 678
    40th: 336 (339 is 1/2 of 678)
    60th: 233 (226 is 1/3 of 678)
    80th: 164 (169.5 is 1/4 of 678)
    100th: 122 (135.6 is 1/5 of 678)
  12. Purple

    Purple Bundle of purpliness

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    A question someone asked me to which I cannot seem to find a clear answer in the official rules:
    Do the votes from the first round carry over to the second round or does it go back to zero votes and voting starts again from scratch in the second round?
  13. Hope123

    Hope123 Senior Member

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    I too occasionally am frustrated with what little people are willing to do but then someone comes through on something and I am encouraged by it.

    It should be remembered that even for big well-funded surveys and studies (medical, political, marketing, etc.), that the response rate of people filling out/ answering surveys is surprisingly low -- usually less than 50% -- unless some prize, incentive, etc. is involved. I remembered a long time ago, I surveyed 100 or so students on a matter (no prize involved) and got a 50% response rate and everyone was surprised by that.

    In terms of contributing, usually what works for me is designating a certain amount from my account to be deducted and given to a charity ahead of time. This is how I contributed to my retirement fund and funds to charities each month before I became ill with CFS. At the end of the year, I'd end up donating several hundred to charities but because I never had the money in the first place (as it was given to the charity right away), I didn't really feel like I "lost" money or felt deprived.
  14. Dolphin

    Dolphin Senior Member

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    I don't know for definite but apart from a "feeling" that it's from scratch, a couple of things suggest to me it's likely to be the case:
    (i) I think they would have explicitly said that votes are carried forward if that was the case so that people would continue to make an extra effort;
    (ii) The "Big Idea" part of it which is what people are supposed to be voting on I think (as they see it) - if votes were carried forward, then a lot of the votes weren't on the "big idea".
    But people could always contact and ask explicitly.
  15. Dolphin

    Dolphin Senior Member

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    Yes, people making a special effort gives me a boost too - and there have been quite a few examples in this thread.

    I've heard quite a few people say with the monthly donations, they adjust so then don't notice it. "Once off hits" feel much more. [Repeat: I know some people are in a tough financial situation and don't expect everyone to donate].

    Saying that, I don't think it's anything close to 30% of people with ME/CFS who have seen this who have responded - I know that wasn't your explicit point, but I wanted to mention percentages. I would say at most 10% of FB users who have seen a request, but I'd say it's probably a lot less than that. But it may be a lot more in the US: I have avoided picking up FB friends (have around 100 requests outstanding) but looking at my FB friends and their votes (one can see from Activity --> My Activity) it's still the US contacts who are voting, the UK etc ones who are not). Maybe other people could check their FB friends and see what the numbers suggest. We're talking serious money that is up for grabs so a little research is worthwhile. As I think I and others have said, if we get people with ME/CFS to vote this time, they should be much more likely to vote the next time.

    BTW, got my three siblings to vote already and my mum has agreed to set up a FB account so she can vote.
  16. Dolphin

    Dolphin Senior Member

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    Data on votes of people's FB friends broken down by country

    Here are mine:

    US (10): Yes: 6 (60%); No: 4 (40%)

    Europe (13): Yes 0 (0%); No: 13 (100%).
    11 of these 13 are in Great Britain and Ireland i.e. the FB sites they visit are English language ones.

    More than half of the European ones I would say are on FB quite a lot.

    I would not say my sample is representative - nearly all of my US contacts hold some sort of positions of responsibility in terms of running ME/CFS groups either online or in the "real" world.

    For round 2, people will probably get private messages from me - perhaps immediately for the people who didn't vote in Round 1 so they have plenty of time.

    -------
    Apart from me, I haven't seen many posts on it on non-US FB sites, yahoogroups, etc. Perhaps other people should highlight it - I've highlighted it quite a lot (and on lots (!) of different FB groups).
  17. Dolphin

    Dolphin Senior Member

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    Instructions in Spanish

    There are instructions in Spanish on the FB group, "Fibromialgia y Sndrome de Fatiga Crnica" (April 22).
  18. Dolphin

    Dolphin Senior Member

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    I'm trying vote swapping on ME/CFS forums!

    For what it's worth, I've just posted this to a few forums.
    I thought I'd try it as:
    (i) it's another chance to plug the competition
    (ii) I want people with ME/CFS to be voting as I feel a) there's a better chance of them voting in Round 2 b) They might ask other people c) They're unlikely to "defect" and only vote for non-ME/CFS charities in Round 2.

    ---------

  19. Dolphin

    Dolphin Senior Member

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    Nobody has contacted me so maybe this is a flop. Although at least it gave me a chance to plug it again, in a different way.
  20. Hope123

    Hope123 Senior Member

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    This thread still has the words 'US' on it and one thing I will do when the next round comes up is to post a thread with the word "International" in it to alert people who aren't US-based.

    As long as people perceive the charities to only benefit US residents (I think many people don't believe this and if they do, it's not too hard to convince them that it's the XMRV discovery that has re-energized the CFS research field internationally) or that only US residents can vote (not true), they're not going to do it.

    My thought is to contact every known ME/CFS group out there internationally (something of course I won't be able to do by myself) and ask them to notify their members of this item. I am certain some groups will not participate for reasons of competition or feelings that this won't affect their members but I am optimistic that some will.

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