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A small frustration of mine

Discussion in 'Action Alerts and Advocacy' started by Frank, Jan 25, 2010.

  1. Frank

    Frank Senior Member

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    We are a very big patient group, so i thought we could be able to do large organized things. I know there are some patients who aren't able of doing anything and i respect that. But..

    -A few months ago we had the facebook chase community charity giving away money. By simply voting on your charity. The top 100 would automatically get 25K and possibillities to get even more. 1000 votes, i'm pretty sure, would have been enough to reach that top 100. We collected 270 votes. (and i contacted many facebook groups and me-forums)

    -Now just a few days ago Isearchgive did a 24hours action. They where giving aways $5000, $1 dollar for each registration + 1 search. Registering was very easy and could be done with fake data. In my opinion we could have collected $1000+ , but we only collected $8 (of which a few registrations came from friends of mine)

    -I think we could also collect a respectable amount of money via the regular Isearchgive search engine:
    a 1000 people doing an average of 5 searches a day, brings in a $100 a day...

    I think the big issue here is getting an organized group. That could be contacted immediately when chances arise. And the ability should be there to contact them all, with one click on the mouse...

    Opinions?
  2. Advocate

    Advocate Senior Member

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    Hi Frank,

    I think a lot of us are intimidated by the process. I joined iGive once, for a CFS organization, but never figured out how to use it. I still get e-mails from the iGive people, but never understand them.

    Could you do a Q & A? Maybe I could help with the Q part.

    Meanwhile, I'm testing my new--actually my first--signature, below. Oops. I see it didn't work out right. It's supposed to be purple. I think I can fix it.
  3. dipic

    dipic Senior Member

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    I swear, my faith in humanity diminishes with each passing day.

    There are 1 to 2 million people with this illness in the US alone, and how many active members do we have on this forum? A mere 600.

    How many people tuned into Dr.Mikovits live lecture the other day? Even less.

    Out of the 600 people we do have here, how many are politically or socially active? Apparently only a handful.

    I don't know the answer to why this is. Are people lazy, apathetic, ignorant, uninformed... all of the above? All I know is that it saddens me deeply.

    Can you imagine what the landscape would look like if even just the tiniest fraction of those with this illness were proactive? We blame the Wessely's and the Reeve's for the way things are, yet if more of us spoke out and informed our neighbors, politicians, etc. there would be no issue in my mind. As it is, collected we aren't even a whisper... we're barely a wimper.

    It took a committed mother of a CFS sufferer to lead us to one of, if not the biggest discoveries in the history of this illness. One woman. Imagine what could be accomplished if, again, just a small fraction of those with this illness were active and committed to change and progress.

    Sorry, I'm done ranting. I hope I don't sound like a complete pessimist. I would like to acknowledge the people who are active within this community. I can't tell you how appreciative of some of you guys and how much energy and effort you put into what you do. You are truly inspiring.
  4. flybro

    flybro Senior Member

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    I wonder if it would be wort start a couple of groups, international, USA, Europe action groups.

    What would be useful to me, is a page with links to the action items, including copy letters and who to send them to. If they were speperated into country categories, I wouldn't get so confused betweed whats for my MP, or Department of Health, and what is for another country.

    I've been learning about ME/CFS since October and still don'y know where to go te get copy letters, know who and where to send them for advocacy and activism.

    Same with the money thing, obviously we in the UK have benefited hugely fro the the work inthe USA.

    However in the UK they ignore the findings of the USA and it is important to get advocacy and activism operating so we can easily find and do things that help us know how and where to apply preasure and keep the presure on.

    As most of us have ME/CFS we are probably all a bit frightened of taking on organising or being responsible for something that requires cognitive abilities and reliability. We also have limited energy and funds so we need to spend both energy and money wisely.

    I would be more than grateful for notice to act and how to act and would do my best to do what I'm capable of. I just need someone with the brains to direct me.


    Cheers
  5. Esther12

    Esther12 Senior Member

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    That's me.

    I feel like I'd need to spend a lot more time and energy researching the issues than I have available to be able to make a really useful contribution.

    I'm sceptical of my ability to remain sufficiently detached when reading and thinking about CFS and find that my reading of papers can become affected by emotional responses. I also think that CFS patients tend to be treated dismissively by the medical community even when they have put in the work required and presented their arguments carefully and rigorously, which rather saps my motivation. Currently CFS research seems such a mess that you'd have to really devote yourself to a detailed reading of every paper to be able to present a genuinely informed argument, even if I were capable I'm not sure I'd be willing to do that.

    I'm grateful to those willing to put the work in, but I don't think I am. I wish some of the big charities were more involved in the critical analysis of CFS papers (or all types) just to try to tone down the quackery a bit, it seems crazy that seriously ill patients need to be personally involved in this sort of thing.
  6. Hey guys,

    Don't get yourselves down. I work with a lot of charities on campaigns/advocacy and compared to them, the motivation of the group on this forum is simply stunning.
    Particularly seeing as most of us can't leave the house, can't think straight for more than 10-30 minutes at a time and forget words, it's a wonder this forum is even here.

    1,000,000 people marched on the streets of London to tell the Government not to go to war.
    We still went to war.
    From this you can see that it takes a lot more than people power to change the world.

    We need to act smart to defeat our own personal Iraq war.
    Playing the numbers game counts for something, but a lot less than one single well-crafted message to one person at the right time.

    In some ways, 1,000 people is almost too many because the community becomes difficult to manage.

    The thing is, just by being here and discussing things in a persuasive and intelligent way, we are building a database of valuable, sticky, informative content that Google loves.
    And Google is many many times more powerful that even 2 million of us could be.

    "Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has." - Margaret Mead

    -Rachel xx
  7. Dolphin

    Dolphin Senior Member

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    I share your frustrations (I actually found that link last night but when I went, the offer was over unfortunately - it was 2c a search but I'm already signed up with everyclick.com).

    I agree that an organized group could be useful. But how many will take part? I think the message needs to be repeated to people that they need to be part of the solution. For example, especially outside the US, governments/taxpayer research is not huge when one considers how many illnesses it has to be divided between as well as the fact that it was also be covering non-illness specific research and basic research. The ME/CFS community could easily raise more than a "fair" allocation from the government coffers. Don't get me wrong, I have no problem people trying to get money. But the message seems to go out that it is just governments'/similar fault that there is not much research. I think part of the problem is the tiny percentage of people affected to try to raise money for research either through donating or fundraising including methods such as the one you mention. Also one needs researchers to be putting in research applications. But the amount of money the community is raising does not support many researchers. I think for example the CAA (in particular) have shown that if you fund smaller studies, often they will go on a get bigger grants. Other studies have also gone on and been funded.

    As I say, I think it needs to be repeated regularly that people can be part of the solution.
  8. Robin

    Robin Guest

    I will be happy to help with an IGive Q&A. Post the Qs here or PM me, and I will do the As. There's an Igive thread somewhere and a "support the WPI sticky" too, but maybe this can be its own sticky?

    Nice job on the sig!
  9. Dolphin

    Dolphin Senior Member

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    One good place to get messages out through is Co-Cure http://www.co-cure.org . A lot of group leaders follow it as it is a low volume list with just announcement messages.
  10. Dolphin

    Dolphin Senior Member

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    I agree with some of the sentiments. Although one or two minor points: there might be 1 or 2 million people in the US but they aren't all diagnosed. But of course more can be diagnosed by activities such as awareness-raising (the CDC/CAA did stuff on this which I thought wasn't the worst). Similarly in other countries, more potential people could be brought into the movement if awareness-raising is done. Also, with good PR, it makes the illness more acceptable as something to give more to (in fundraisers) and it can more pressure on authorities to act.

    ETA: Also in some ways it is useful to remember that there aren't that many people who do things for one reason or another. The Rep. of Ireland has 4.5 million people now (approx.) yet often I know that if I don't reply to an article in a newspaper (say) nobody will. Similarly, despite lots of begging, no millionaires are supporting the cause in Ireland. So I know I should give something out of my disability payments (I know some people can be in difficult circumstances - I reckon if people gave 1% of what they spent on treatments, it would add to a lot and would adjust for different disposable incomes).
  11. xlynx

    xlynx Senior Member

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    Hi Frank,

    The reason I didn't get involved in either of these is because I didn't know about them. I think flybro is right when he said that if someone was to take management and post when they hear about it it would be easier to take action. I know that if it was easy for me to hear about it I would definitely take action and get others to. Maybe we could start a mailing list, so that every time one of these issues come out a member of the group can send an e-mail to the mailing list and everyone get a copy.

    I don't mind to set up a web page to allow others to sign up a mailing list if us and people that will agree to getting information using the mailing list to notify others.

    Thanks Jerry
  12. Dolphin

    Dolphin Senior Member

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    Yahoogroups.com are one handy way to set up mailing lists. One can have a list for announcement messages only, no discussion. One can make messages pre-moderated - although to make it worth quickly, it would be best to have a few moderators.
  13. frenchtulip

    frenchtulip Senior Member

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    I have a tough time understanding it.

    I, too, get frustrated when there are opportunities to help ourselves, and many people choose not to do so. I voted in the Charity Giving giveaway and was amazed that so few people supported our causes. I have used I Search I Give to do numerous searches and have tried to get others to use it. We have the opportunity to write letters to government officials using templates provided by the CFIDS Association of America. It is really easy and yet relatively few avail themselves of the opportunity. I think part of the problem is that many individuals think that one person can not make a difference. But if we band together, we can make quite a difference.
  14. George

    George Guest

    I'm unreliable. I may be able to something great today and then not be able to do squat for the next month.

    Last year I tried to build a web site for friend. Something that use to take me a couple of days tops. It took 6 months, I got confused and ended up having to hand it off to a pro (grinding teeth) then I was out of it for three weeks from the work (energy) and stress.

    I'm very hesitant to get involved in anything because I know I can't be counted on. I hate that feeling of having let others down, of making a commitment I can no longer fulfill. It succcccks!

    Course that's why you're and administrator and I'm not (grins)
  15. Koan

    Koan Be the change.

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    Like many others, I would guess, I fried my brain with all the XMRV activity. I can't write an email now. That is both my reason for being less active than I would like and also a warning re the garbled nature of this post.

    When we talk about the entire patient population there are so many obstacles to action: many are too sick to do anything, many are struggling cognitively to understand what must be done, many are just barely keeping themselves safe and fed, many who can still work are completely exhausted of physical and mental resources by that effort, many have children they must care for while ill, many are unfamiliar with the internet and use it in a very basic way... the reasons why people with this illness may be unable, rather than unwilling, to act are endless.

    If there is something you think people can do, and you are willing and able to put in the time, make it easy for them to do it. Then, of course, be patient and encouraging. Bump the relevant post repeatedly and understand that some people read only the new posts so won't see a sticky in a sub-forum.

    There is no point in fretting over what other people are or are not doing. If you want someone to do something, make it easy for them. Then, make it easy for them again... and again... and again... Keep doing that until they get it.

    Please do not assume that people are unable to do the things you believe would be helpful because they are lazy or whatever else was written here. I must say the word "lazy" really grates in this situation. It is much too close to what we hear from others.

    For myself, I have been invited to work on something that I think sounds really solid and really exciting and involves some really smart and committed people. I have had to decline to become involved... for now. I am not as badly affected as some but after 30 years I wear out fast and bounce back much more slowly than I once did. I'm not lazy or apathetic, I'm sick.

    Please consider, if you have the strength, strategizing how to make some of these things Fog Proof. I think you all could make a huge contribution to the cause by figuring out a way to make it really easy for people who are badly affected cognitively. I am embarrassed to admit that the effort of writing this has brought me to tears. I am not sad - I am befuddled and exhausted and woozy and dizzy and confused.

    I better stop now.
  16. starryeyes

    starryeyes Senior Member

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    If we'd all just get well, these projects would get done much better and faster. ;)

    ((((((((((((Koan))))))))))))

    I'm sorry you had to turn down an exciting project. That really makes you face your limitations and that's so hard.

    Rachel, thank you for your post too. That made me feel better.

    I want to help out and I did the Igive but I don't do FB... I also don't do email but I do come in here several times a day and do what I can and I want to feel good about that, not bad.
  17. Koan

    Koan Be the change.

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    Thanks (((Tee)))

    I knew there was something else I wanted to put in my list of reasons why... many people don't FB.

    To us all, those who can right now :victory: and those who can't now but will later :sofa: and especially to those who probably won't be able for quite a while :In bed: ,

    :hug: .
  18. Dolphin

    Dolphin Senior Member

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    Sorry to hear you are not so well.
    However, I thought I'd point out that lazy had a question mark beside it when somebody else used it. And then one person used it about themselves. You are quite entitled to reply to the post. I just wanted to point out that there were many other points made in the thread. This is perhaps more directed at people who might pop to the end of the thread and then give up.

    I thought it was perfectly legitimate of Frank to start the thread given his experiences and look for thoughts on the issue.
  19. starryeyes

    starryeyes Senior Member

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    Oh yes.. it's good Frank and everyone are sharing their feelings regarding this. It's good to air it out and see what we're all thinking. That's one of the reasons I love this place, because we can all do that here and it's been very productive. I think we all learn a lot from each other and ourselves here. I appreciate the honesty people have here about how they're feeling.
  20. Koan

    Koan Be the change.

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    Tom, I had meant to say: never give up. Keep at it. If you have the strength, try to make it easy for others. Do that again and again and again.

    I also welcome this thread and totally get the frustration. I had hoped to offer some useful suggestions including: never give up.

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