Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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How to help raise money

Discussion in 'General ME/CFS News' started by Andrew, Dec 8, 2012.

  1. Andrew

    Andrew Senior Member

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    I realize this is being talked about elsewhere. But I don't see why more people are not willing to take 30 seconds to a minute each day to vote for charities that are posted here. I remember the first appeal that a patient posted here. I think it only got 5 votes.

    I was one of the people who did not vote. I didn't want to join Facebook because of privacy concerns and because I thought Facebook is silly. But then I asked myself, which is worse, having ME/CFS or joining Facebook. The answer was obvious.

    It is really not that hard to vote. I use a reminder program that pops up every day to remind me to vote. I put the URL to the charity is on the reminder. So it's all right there for me. I don't have to look anything up, or rely in my memory.

    There are researchers and doctors out there willing to work on our behalf. They don't have to. They could be going for the easy money by studying AIDs or Cancer. But they have chosen our area. Let's help them help us by voting for these charities.
     
  2. Sasha

    Sasha Fine, thank you

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    Good points, Andrew.

    The Aviva contest for $150,000 that's on now doesn't require Facebook. You can use FB if you want to but you don't have to.

    But your general point is a good one. I don't want to be sitting in my rocking chair in 30 years time thinking, 'I'm still severely disabled because the research never got done, but thank God I never joined Facebook or wasted a few minutes in online voting contests.'
     
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  3. Tuha

    Tuha Senior Member

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    yes, who will find the way how to motivate many patients to join such small activities - he will get a big price from me.
    It´s sometimes so difficult to motivate just few people. after some discussions i couldnt believe what kind of excuses the patients found out to not join the easiest activities. but it´s not worth to cry - let´s get more patients to vote
     
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  4. *GG*

    *GG* Senior Member

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    Well, I think it is good to engage our fellow sufferers, and hope to get them active, if they can. Some times I think people have not suffered enough, to want to help themselves. Unfortunately with the brain fog, it can take a lot for things to sink in, and hopefully they will eventually see that we need to be our own advocates, others will do little for us, if we do not do, what we can do!

    GG

    PS This could take a while to build up, even if we do not win this event, we must persevere, and build our base for a future contest! Rome was not built in a day, and many people are just discovering this site etc.., and it will take a while for them to become better, and then be able to help in little ways, that will help many in larger ways!!
     
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  5. Kina

    Kina Moderation Team Lead

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    I have two Facebook accounts. I use one for family and a few friends and the other I use for voting in contests etc. The one I use for contests has a yahoo email attached to it that I only use for filling out online forms etc -- this is the email that gets spammed, the other email I have I use for family and it doesn't get any spam.

    There are also some extensions that you can add to your browser that stops FaceBook from tracking you -- for chrome I use -- 'FaceBook Disconnect'.

    Kina

    Remember to vote in the Aviva Contest everyday until December 12th. :)
     
  6. taniaaust1

    taniaaust1

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    Last competition I tried to get involved in (in the end facebook wouldnt let me vote anyway as after joining I couldnt sign in.. I still dont know why) lost my hotmail account (with all my friends there) due to joining facebook ON A DIFFERENT new account I created. I thought it wouldnt track me back to my hotmail account if I used another account to sign up on facebook on. When I then went to my hotmail after "TRYING" to access FB so I could vote.. my hotmail then come up wanting extra vertification that it was me and asking for a phone number when I did the normal thing and forgot my password (instead of coming up with the secret questions it usually does when one forgets password).. which I didnt want to give phone number.. so hence I ended up having to dump my hotmail account and hence then LOST ALL MY FRIENDS THERE and other important things in the process. I felt overwhelmed with the whole thing and not up to trying then to get the trackers off. The whole situation had me in tears.

    I was so overwhelmed and upset over this situation that my boyfriend ended up having to open a new account for me as I wouldnt then use hotmail anymore and he had to find somewhere which didnt ask for phone numbers etc

    After this experience.. Im now not trusting to do any competitions (my Aspergers black and white thinking has now kicked in over it. I trusted got bitten once so hence wont do it again).. pity my FB experience affected me in such a negative way (people here had been telling me it would be fine and just to join it not using my name or my normal email.. it took people here 2 years to be convinced it would be fine and yeah it wasnt at all fine with what then happened)..even more upsetting that even after it caused me all that issue.. I couldnt even get back into FB to vote so it was all for nothing.

    I dont know if i was doing something wrong due to my brain or not.. I couldnt figure things out. (anything which causes me heavy thinking.. like faults my brain.. joining new accounts, thinking up passwords etc, doing new things... I find is hard on my head obviously to the point even thou I was trying hard to vote.. I still didnt manage it and just ended up very confused and still not knowing what i did wrong).

    Im fine rapidly spilling words out onto a page here without thought .. just spitting out what is there at the surface of my thoughts (type faster then 60 words per minute) but if I pause and have to think.. it hurts my head and my thinking like faults up and then my stress level raises. (I dont expect those who dont have this issue to understand as I think its one which needs to be experienced to be understood). I literally go into confusion and then to pieces with thinking just having to open a new account.. sends me spiraling downhill.

    . (Im also one who believes in the NWO stuff and think that one day all this info out there could actually end up getting certain people of certain religions, killing off the disabled etc etc killed.. Look what happened in Narxi Germany, look what happens in some countries even today with certain groups prosecuted or killed. I dont think humanity has changed.. it has a dark side (those who have ended up in genocide, I bet didnt think it would one day happen to them). I see humanities darkness a lot also in the shockenly bad treatment Ive had with the ME, lack of love and caring out there (bad treatment has let me with very little faith in humanity at all).. I think it is a HUGE danger for peoples info to be being collected online and followed from what sites you are involved in etc. I dont expect others to take on my beliefs but ask others to respect them and I know some others at this site carry the same beliefs so I hope they will be respected too even thou they may not vote. (not voting due to our beliefs OR just cause we cant due to our head space when trying to think (its like an exertional burn out symptom).. dont make us to be bad people and certainly dont mean that we dont care.

    Sorry for the long post but I think some people believe that those who arent voting dont care..but that isnt always the case and I hope my post leads to more understanding of why some arent. I not only went againt my belief system (so I found that distressing in itself as I felt like it was putting me in danger and supporting something FB which I see as being so wrong) when I last tried to vote throu facebook but ended up due to my head not being able to vote anyway due to my brain.

    Whole thing badly impacted me and I still regret trying to do it (I cried for days over loosing my hotmail over it and lost friends and important stuff in my email). It just all proved to me once again.. I need to focus on only doing the stuff I FEEL LIKE I CAN COPE WITH.. not thinking much stuff.. and not go by others telling me something is fine as they cant judge what it may do to me. Things they find not an issue could well be an issue to me.

    Im still upset that I was stupid enough to listen to what others thought rather then what felt ok for me. (having trouble stopping raving on about it all as Im still upset over loosing my hotmail and friends over it. I was STUPID to trust others saying it would be fine ans still hurting as I did allow myself to trust those here with what they said and feel left down as the info for me was wrong.. I shouldnt tried it. I was put under pressure by people to vote .. made to feel guillty if I didnt and it all just backfired in my face and left me with issues Im still dealing with. Im still upset over it). Some of us are "fragile" due to this illness and others arent getting how hard some things are for our heads to handle.. and when my head gets affected.. I end up emotionally affected too. and I also feel STUPID as people here are saying all this voting stuff is easy..but with that other competition.. I was unable to figure it out thou I tried hard (as I said, I still dont know what I did wrong). What is easy for you.. may not be easy for another.. This whole thing caused me to like beat myself up physologically. I hate it when others are making me feel bad cause Im not up to doing something and I try and then fail (ive failed too many times due to the ME and now hate failure.. I usualy try to stick with things I know I should be okay doing which then helps boost the confidence this illness has taken away from me).

    Im still shocked the FB tracked me to my normal hotmail account and then went and affected that with it then requiring me to give my phone number or not then being able to get in.. EVEN THOU i'd signed up to FB on a different account I opened just to do that.

    :( hoping this post would make me feel beter over the issues I had with that other comp but sadly it hasnt. Im still angry and annoyed and upset at myself that I couldnt manage the vote thou I tried... and annoyed I listened to others instead of listening within to what I felt I could achieve without causing myself issues at the time. Trust your instincts with things.. if you feel like you arent capable of doing something I suggest not to try to force yourself to do it as you will have isues to deal with if it then backfires. .. and one just ends up with a further lack of confidence. (sighs.. I think I need to see my psych over how I feel about what occured with the last comp I tried to vote in and my emotions around the not llistening to my inner feelings and hence not respecting myself and what felt right to me.. should of not allowed others to influence me). Im too black and white and not managing to feel different over it.

    I do thou really hope that those who use facebook and dont get overwhelmed with their heads when trying to do new things (open new accounts or whatever) vote thou. Ive been encouraging people to vote. I hope no one feels guilty or beats themselves up over not being able to vote. RESPECT YOURSELF
     
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  7. Andrew

    Andrew Senior Member

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    After that experience, I can see why you don't want anything to do with Facebook. It's a pity more of these charities don't provide an alternate method.

    Interesting thing about Facebook. I still don't like it, I don't read my page, but every so often I get an email telling me that someone from decades ago wants to be my friend. That's nice. Still not fond of it, though. Also, I cannot believe the foul language some of my acquaintances use on Facebook. Yike!
     
  8. Nielk

    Nielk

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    This question that you raise Andrew has been on my mind for a while. As a matter of fact I started a similar thread a little while ago.

    I am very surprised at the seemingly disinterest of people around this subject.

    We all want and seek funding whether from the government or from a private venue for ME/CFS research and do or treatment....as long as we don't have to get involved. We are great at criticizing others for the type of activism or advocacy they do or are divided as where money should go as if we own this money ourselves.

    When it comes to these online charity contests, many feel that they don't need to get involved. Others feel that they have been traumatized by previous contests where the money ended up being misused. I can understand these feelings but, who are we hurting by our inaction? We are hurting ourselves and the whole community of ME/CFS patients.

    As a group, we are too ill to do proper advocacy. Real activism is out of our realm. There is no way that we can do what the AIDS groups have done in their history. We are too ill for real action. Who is going to look out for us? At some point we are going to have to take some responsibility for our destiny.

    Will winning $150,000 for Medical equipment and a biobank for a ME/CFS facility in Canada change the course for ME/CFS you might ask? I would answer maybe? It will surely bring us closer and $150,000 here and $150,000 elsewhere add up and is certainly more than if we never tried.

    In addition, I am not sure if we all realize that these online contests are a perfect way to raise awareness about ME/CFS. We are out there getting free advertisement throughout the contests. People are reading about it on a daily basis and that can only be a positive thing.

    I understand that many are not capable to do promotion or even to ask friends to vote for these contests but, I would think that most of us who are on here, have a computer, are touching the mouse right now, can just press a few clicks and vote once a day.

    It is not easy to promote this idea of encouraging people to vote. It certainly does not seem popular and I'm afraid that many dislike it. Yet, I feel compelled to do this because of a personal experience. I know of a severely ill ME patient who is totally bedbound and from her bed,laying flat in the dark and in the silence has singularly done more than you can ever imagine to promote and raise awareness for ME/CFS and these charity contests. She has done this anonymously with dignity and selflessly.

    She inspires me.
     
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  9. Sasha

    Sasha Fine, thank you

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    Hi Tania - I'm sorry you had such a bad experience after trying to use Facebook. I set up a dummy email account, not in my real name, to use it for online voting and haven't had problems but I do find Facebook basically incomprehensible at some level. I leave it completely alone except for voting competitions.

    I've encouraged people to do the same in the past and I'm really, really sorry if my encouragement led to this situation for you. It wasn't my intention to pressure people to do what they felt uncomfortable with, just to consider whether it was worth rethinking their reluctance to use Facebook or overcoming their inertia to vote in online contents in general (they don't all use Facebook - the current Aviva contest doesn't).

    I agree that people shouldn't do what causes them a ton of stress and anxiety and think you were a star for attempting it at all, given your concerns and your cognitive issues. I'm really sorry that you're still experiencing the fall-out.
     
  10. Nielk

    Nielk

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    @Tania - I am sorry about the difficulties you went through in trying to set up a Facebook account.
    I just wanted to remind you and others that for this current contest of Aviva, one does not need a Facebook account in order to vote.
    Here is a video with easy voting instructions.
     
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    taniaaust1, thank-you for sharing your reasons to not vote. That is the only way those of us who wonder will understand. I had thought that it might be because it is beyond the cognitive capability of some members.

    I share your distrust of Facebook and your experience has just reinforced my determination not to join. I am also blaming Facebook for you unwillingness to vote in other contests that are less dangerous and complicated.

    When you need to create a password, consider two things:
    1) How likely is it that someone else will try to get into the account.
    2) What are the consequences of someone else getting into the account.

    In the case of voting contests, I don’t think it likely that someone would try to get on and use your votes. If they did, it would not be a terrible thing - not like losing an e-mail account or identity theft. When a password isn’t very important, I use an easy one. Since the current contest is for money for a biobank, I used “biobank” as my password. When I cannot think of an obvious one, I use the word “password” as my password.

    If your primary confusion is in getting signed up for the non-Facebook voting contests, would your boyfriend do it for you? If the whole thing is too much for you, maybe he would sign up for you and vote for you, and for himself while he was at it. That would be two votes for the ME entrant.
     
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  12. Stukindawski

    Stukindawski

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    A password tip for anyone interested:- One of the most secure password types is actually a random string of words. Password crackers have now adapted to passwords like "c00k135" (cookies with numbers substituted for some letters).

    A password of random words like "dogroadforkpony" is much more difficult to break and also does not require a random string of difficult to remember numbers and letters.

    Of course if you're using something like firefox, the browser can store all your passwords and you can deploy a 'master-password' to keep them safe.

    As I write this, I don't mean to dispel anyone's reasons for not using FB, just some general advice for those that do and passwords in general. I can think of plenty of ideological reasons to not want to be involved in the arguably insidious world of social media.
     
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  13. Andrew

    Andrew Senior Member

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    How about typing your password upside down, like this: pɹoʍssɐd ɹnoʎ :)
     
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  14. Nielk

    Nielk

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    How did you do that?
     
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  15. Dolphin

    Dolphin Senior Member

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    I think the building up point is important. Different causes can attract different people. I remember with a recent contest I saw two people vote as it was for PR - they hadn't voted before. I think it's much easier to get people to vote again when they vote once.
     
  16. Andrew

    Andrew Senior Member

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    There are characters supported by computers that happen to look similar to upside down letter. Or, at least most of the lower case ones. There are also websites that will do the translation for you. Just search Google for "upsidedown text."
     
  17. Nielk

    Nielk

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    Cool! I never knew that. For a minute I thought that you were typing with your keyboard upside down.:rofl:
     
  18. Hope123

    Hope123 Senior Member

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    Andrew's point is well-taken and is also how I view things -- I'd rather go down fighting and trying to do what I can than wait and wait and wait some more. And Nielk's point about taking responsibility is good too but we're preaching to the choir here.

    The quote I like to remember is " We are the ones we've been waiting for." which Obama has used in his speeches but comes from a poem about South African women originally. There are people on our side who are pulling for us but no white knight or cavalry ready to jump in and solve everything.

    There was an interesting article about passwords for those interested in the NYTimes recently:
    http://www.nytimes.com/2012/11/08/t...s-that-drive-hackers-away.html?pagewanted=all

    [Also, in the future, if people have a hard time with the technology, perhaps some people could set up a service to help out initially. This is a bit invasive but you can actually get onto other people's desktops and guide their screen cursor/ type stuff remotely using the free service JoinMe provided the other person gives you temporary permission. Great for being able to see the other person's computer screen directly rather than only chatting or talking by phone to direct them.]

    https://join.me/
     
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  19. taniaaust1

    taniaaust1

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  20. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    That is why I use "password" as my password on low-risk accounts.
    Try to not even worry about little glitches like this. I think everyone can see where the quote ends and your response begins. I have seen this happen to other people. I do not know what causes it.
     

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