New, Permanent Facebook Group for Online Contests (Fundraising)! - Info in Post #1

[eric_s]

Thanks, Kate. We will of course list that one on our FB page. If you (anyone) have not joined our group yet, have a look at it here http://www.facebook.com/?ref=home#!/groups/115200951912652. If you don't like it, you could still leave again, but we hope you won't. Every additional voter will help us win more, which will benefit everybody with ME/CFS. We are still starting up, but there's already a nice group of people there and we are in the process of getting everything ready, so it will work perfectly as we grow. We already have a list of contests where you can vote and of contests where we are preparing submissions for entries.

 

[Nielk]

In light of our success with the Vivant contest winning $100,000 for WPI, now would be a great time to join us on the Facebook page working for charitable events for our community. This experience clearly shows that when we pull together, we can accomplish a lot. So, please take a look at https://www.facebook.com/groups/115200951912652 and join us.
:victory::victory:

 

[eric_s]

Yes, exactly. More voters = more money = more research and recognition = better treatments and support

Next year we could win the main prize plus more than one regional prize, if enough people participate.

 

[Nielk]

Another reason to join the Fundraising group on Facebook; P.A.N.D.O.R.A. won $5,000 Citgo gas card. We were only able to achieve this by awareness of the contest and by our daily votes.
Congratulations and join the page https://www.facebook.com/groups/115200951912652

 

[ePat]

Would there be any chance of an email group (unrelated to facebook) for notifications of contests ? I think that would be great for those who don't want to join the facebook-group but would still want to help out. There are people out there who find facebook confusing, a time-waster and annoying if it sends messages for every smiley a member ends up posting. Also, not everyone has the time or the impetus to browse forums like this one in search for contests. It would be a shame to lose the votes of these people who don't want to participate in discussions but are happy to do what they're told (click on a link and cast a vote). This might be especially true for friends or relatives. Thanks.

 

[WillowJ]

This seems like a good time to begin a Facebook Survival Guide.

I. Managing your News Feed

What is a News Feed?
When you click on Home, you see a list of your friends' activity: status updates, links, and so forth. This is your News Feed (oh, it's now labelled in big letters, hard to miss... but I used to have people ask me what it was when I said "news feed", so I included an explanation).

Depending on how many friends you have and what they like to do in their spare time, you might find your news feed annoying. For instance, there might be a million posts from certain games (because those who play that game may have to ask each other for help by posting on their wall) like Mafia Wars, Farm Town, and the list goes on and on.

That's ok. Move your mouse towards the top right of any post you find annoying, and a magic button will appear. With that button you should be able to hide an application. I can't find any applications on my newsfeed right now to double-check that it's working the same as normal (Facebook changes stuff every few months; it's a huge pain).

You can manage what people and applications you have hidden (and unhide anything you've hidden) by scrolling all the way to the bottom of your newsfeed and quickly (before it adds more posts) clicking on the small blue link "Edit Options".

You also want to check here ("Edit Options" at the bottom of your newsfeed) to see whether Facebook is showing you "all your friends" or only "those you interact with most" and make sure it's set how you want it.

There are also programs you can download to manage (clean up) facebook for you:
http://download.cnet.com/Facebook-Purity/3000-2378_4-75217054.html

 

[eric_s]

Thanks for your input, ePat. It's good we get a feeling for where the people's problems are, how they feel about Facebook etc.

There is one major problem with your suggestion, and that is that most contests, especially the 2 most important ones (CHASE Community Giving and Vivint Gives Back Project), require Facebook. The votes are cast through Facebook.

We plan to also list contests here and of course we could also do a mailing list or something like that. The problem is that we are already very busy with the work on Facebook and if we have to do it in parallel on forums and on a mailing list, that will not be very efficient and it would probably simply require more people to do than what we have at the moment. We are 5 people running the Facebook group. We plan to expand, but if we would like to do a mailing list, for example, i think we would need additional people who would then be in charge of that, so that it does not add to the workload of the people who run the Facebook side of things.

While i think it would be best if people joined Facebook, it's good to get this feedback and ideas and i'm happy to continue that kind of discussion here. That's what the thread is for, among other things. But as Willow said, all a person has to do to get rid of unwanted messages is to change the settings. This is easy to do and takes 3 minutes. On the Facebook group we have posted a link to some pages that explain how to adjust the settings, so people can protect their privacy and don't get bothered by the kind of messages you mentioned. Also we can explain to you how to do this.

I would like to encourage people who don't have a Facebook account yet to give it a try. There are ways to solve the things you are worried about and for most contests there is no way around Facebook. In regards of how much we can win in these contests, how important they are for our community, i think it would be best if people signed up, even if they have some reservations about Facebook. Many users at first felt like you, but it's not that bad and maybe it's one little sacrifice we have to make in order to improve things.

But we can also consider a mailing list (could you explain a bit what you meant exactly?) and we will also list contests and have discussions about them here on Phoenix Rising. If there are people who would be willing to take charge of this, so it does not mean additional work for the rest of us, that would make things easier.

 

[ePat]

Hi Eric (and Willow),
I think the most important point is to reach more people. I am not talking patients. They have time and can fiddle around with facebook. I am talking friends, relatives and acquaintances. Busy career people. They do not waste time checking up on facebook, even if they do have an account. They might even set up an account just to help out. But they will not hang around the site reading a bazillion posts that contain little or no information. They want condensed information with precise instructions as to what exactly to do. All it would take from a facebook-group-member would be to send out a brief (!) email containing a link and voting instructions as soon as a contest comes up. Try to remember what real life is like. Would you be wasting time on facebook if you hardly had enough time to eat and sleep on top of a busy work schedule ??? Would you be wasting time adjusting your facebook-settings if you could alternatively spend time with your kids or go out and play sports ???
Plus, not everybody would want themselves associated with ME or CFS although they would be happy to vote for this cause in private. Emails are much more discreet in this respect. There's a difference if someone's "friends" can see that they are member of a ME/CFS group or whether they just "like" a company such as Vivint.
What I meant by email-group would be a place where people could register their email-addresses (with an option to unsubscribe) so that they would receive an email notification if a contest comes up. Plain and simple. I could think of quite a few people who I could ask to register their email-addresses. But I would never ask them to go through the hassle of adjusting their facebook-account (let alone download facebook-management programs), simply because it's too much to ask from someone I might not be acquainted with all that well. Pat

 

[Tuha]

There was already a mailing list with around 500 emails but it disappaired (I think because of some technical problems). I think it created a member of this forum Frank - if you like to do it again maybe we can ask him.
How eric said, a lot of contest are through facebook so you have to have facebook account if you want to participate. we already talked about the problem of privacy and so on - this you can simply solve with a fake account with a fictional name.
For example I use for ME/cfs stuffs - fake facebook account and I also created an extra email adress

 

[ePat]

This is not about me or ME patients but about outsiders.
We are asking others for favors. Therefore we should make it as easy as possible for them to cast votes.
The 70 or so facebook-group-members aren't gonna cut it. 500 or so email-members already sound better and I am sure we could get even more people interested in email-subscriptions. You cannot ask distant acquaintances to set up fake facebook-accounts, join an ME/CFS group and check up on that group's activities. Such a request would be classed anywhere from hideous to outrageous.

 

[Nielk]

This is not about me or ME patients but about outsiders.
We are asking others for favors. Therefore we should make it as easy as possible for them to cast votes.
The 70 or so facebook-group-members aren't gonna cut it. 500 or so email-members already sound better and I am sure we could get even more people interested in email-subscriptions. You cannot ask distant acquaintances to set up fake facebook-accounts, join an ME/CFS group and check up on that group's activities. Such a request would be classed anywhere from hideous to outrageous.

Hi ePat,

Thank you for your suggestions and your desire to help us reach more people. I fully understand that many people are weary of using Facebook and you would like to reach others with a mailing list.
The ultimate problem is that even if this mailing list would be set up, they would still have to have a facebook account in order to vote. Even if we would be able to reach them via e-mail, if they are not willing to open a facebook account, they would not be able to vote or help us.

 

[K2 for Hope]

I was able to register an account and follow the recommended FB settings fairly easily (with the PR team instructions). If someone already has an account, they will probably be more familiar with the privacy settings, etc anyway. Several friends of mine were glad I finally got there and also asked if I needed help with the settings.

I receive emails when people post about the voting to the News Feed. To vote, I just click on the link provided in the email, sign on, vote and log off.

Thanks to the PR team to make this possible.

 

[WillowJ]

I think I understand what you're asking, ePat. As the others said, thanks for your input to try and make this process better so it can reach more people. This is how what you're asking would work with the contests we've had so far (it does not solve your all problems, because of the nature of the contests... but I think this will help you understand how the various options would work):

Someone would need to be able to administer an email group, which would be an alternative to joining the ME (ME/CFS) facebook fundraising group. This group would email out notices, the same ones the facebook fundraising group is already planning to send. These notices (from either source) would say when and how to vote.

Voters would still have to use their facebook to "like" Vivint, Chase, or whoever is hosting the contest, and use their facebook to vote.

(The discussion about changing settings was solely for those who didn't want to use facebook at all because it gets too cluttered with miscellaneous things. One does not need to change settings in order to use the facebook group or vote in contests.)

 

[ePat]

YES YES YES, Willow, you got it (jumping up and down, clapping hands - I can't find an icon for that) )

 

[WillowJ]

I'm glad we're communicating. :Retro smile:

but the only thing new (if it could be arranged) with that scenario in my post #33 is not the notices -- they will be available through the facebook group. it would be that one would not have to join a specific facebook group to get the notices, but that they would also be available through a yahoo group or something like that.

I don't know what is involved in running an email group like this, and I won't have a chance to check for at least the next few days.

 

[ePat]

No idea what a yahoo-group is, but why not just work with an ordinary email address. Something like "MEresearchfunds@gmail.com" - I just made that up, but I would not include "CFS" in whatever that name turns out to be and "research" makes the cause sound somewhat legitimate and important. People could contact that email-address in order to subscribe by sending a blank mail with "subscribe" in the header. The recipient / administrator would then just add that email address to the recipient list and whenever there's a contest a notification email with instructions as to how to vote would get sent out to everybody on that list (with the recipient list hidden of course in order to protect everyone's privacy).
All that this would need (as far as I can tell as a computer-rookie) would be an email address and someone who would copy the information from facebook into an email and hit the "send" button.
Pat

 

[eric_s]

It's 5 in the morning here, so i can't read through all the posts. As has been said, you need Facebook to vote in all the significant contests anyway. So i don't understand the logic behind setting up an email list only to send people to Facebook from there.

This Facebook group has only just started. We have a plan, just please, please, please give us the time to actually implement it.

 

[ePat]

Eric: "I don't understand the logic behind setting up an email list"
You answer this yourself: "read through all the posts".

 

[WillowJ]

Hi, ePat. Thanks for your enthusiasm. I think there are still some misunderstandings.

Eric: "I don't understand the logic behind setting up an email list"
You answer this yourself: "read through all the posts".

Eric is referring to the posts on this Phoenix Rising thread.

The facebook group will send out emails so you would get an email telling you how to vote, even without a separate email list. Other than going once or twice to join the group and the event which will send out emails, you won't need to deal with facebook to get information about important contests. I'm not sure if you understood this?

For the big contests we've had so far, you must have a facebook to vote. This is not our decision; and we cannot change it. It is the decision of the people giving away money. The email instructions from the facebook group (and if we had it, an email group) will say something like: first you will need a facebook account, then you will need to "like" Vivint on facebook at this link (once), then vote by following this link (ideally, every day; if you like, you can join a facebook group here at this other link to get daily reminders). [the voting link goes to a facebook page, too] I'm not sure if you understood this?

It makes sense to use facebook for the group because that is what you need to use to vote. Again, you will still get email instructions even if the only option for how to get them is facebook.

No idea what a yahoo-group is, but why not just work with an ordinary email address.

A yahoo group is a program that can, among other things, send out mass emails. It's not as simple as you think to send out an email from an ordinary email address. Someone has to deal with selecting all the addresses of who all wants the emails, the email client has an arbitrary limit of how many email addresses can be used at once, and so forth. There are additional choices besides Yahoo, but if it's done, it would be simplest through an email group like yahoo.

Still, somebody would have to set it up and coordinate with the Facebook group. We don't have anybody to do that right at the moment. (The problem with advocates is that we are all already 120% busy. :Retro smile: )

I'll just close by copying what Eric just said:

This Facebook group has only just started. We have a plan, just please, please, please give us the time to actually implement it.

 

[ePat]

Hi Willow
"I think there are still some misunderstandings"
Yes, and I don't know how to re-re-re-phrase what I am trying to say in order to make myself understood.

"Eric is referring to the posts on this Phoenix Rising thread". So am I. He said he did not understand what the difference between emails and a facebook-group was. At the same time he said that he had not read through the whole thread with all the posts. So all I was suggesting was for him to read the posts with the consequence that he should (?) be able to understand what the difference is and where this suggestion came from (recruiting more people, particularly those who have thus far not been involved, especially people who are neither patients nor carers but those who have nothing to do with this illness but might be more or less distant acquaintances and so forth).

I understand all that you say with regards to the facebook-group, but I reiterate my statement that not everybody is happy to join this group for various reasons, such as not wanting to be associated with ME or CFS, not wanting to be connected with patients etc (see previous posts). I repeat: there is a privacy difference between publicly joining a group of sick people - especially with this political illness - and between submitting an email address and voting for a cause (on facebook). After all voting only requires to "like" an innocuous company such as "Vivint" that can be "un-liked" again after a contest has ended.

I cannot emphasize enough that it is us who are asking others for favors (votes, time, inconvenience). And it should be regarded as our duty to make this as simple and convenient as possible for these people. For some voters it might just save hassle (in the broadest sense), others we will only be able to get on board in this fashion.

(Just on a side note: look at the figures: the facebook-group has stalled at 70-something members, the person who posted that there had previously been an email group around here mentioned 500 people. To me that makes perfect sense).

Re "please, please, please give us time". Take it. As you (Willow) know, this discussion originated a few days ago on the Vivint-contest-thread when I asked where the millions of sick people / voters were. The logical question in view of the relative lack of voters was to ask how to best reach potential voters. And I moved the discussion to this thread that I considered a better and more productive place for it as patting each other on the back isn't going to bring us forward. The vital question is: what can be improved to do better next time. I think that that should be a general question / discussion without a deadline