Discussion in 'Action Alerts and Advocacy' started by shannah, Jul 13, 2010.
Thank you everyone that did so much work on this!!!
I think some of the problem was.. there was no coordination of what CFS groups to vote for. At the beginning votes were being called to be used on WPI which people didnt realise wasnt allowed to be used. That probably caused some confusion and may of put people off of voting esp when they cant get their heads together for simple things.
We need to not forget that the CFS communities are the very sickest group about and for many of us voting IS really too much (our communities are sicker than AIDS communities).. many cant do the things they want on the computer.. more than probably 25% of our community would of been unable to even vote due to health.
im embarrassed.. i myself thou encouraged people who i hoped had facebook accounts to vote, I didnt myself... as i cant stand facebook at all and wanted to be no part of facebook, i hate that site.. i just wish the competition wasnt on face book.. i dont know how many others hate facebook so much that they didnt sign up. My whole family wishes i was on facebook so i could have family contact.. but i wont even sign up for that).
I myself thou i hate facebook that much, was determined to play a part. i did my part in another way when i saw just how much at risk we were.. by getting awareness throu other medical forums (non CFS ones but ones with people with neuroendoimmune kinds of things, to those groups where people have undiagnosed mystery illnesses etc.. telling them about pandora.. putting up the link and asking them to vote. (i got 49 views at one of my links on it, Im sure we got some votes out of that). (right at end i almost did vote myself but i did believe we would just manage to scrap throu).
I personally think thou we could of done better, that we as a community should be patting ourselves on the back for our effort as doing even little things are often BIG things which are using our energy. We all gathered as a community, focused on making sure we stayed in the running and got some money for research.
Maybe next time this convo runs.. the CFS communities could choose two CFS groups to focus on.. and aim to beat what we did this time. (of all the charities out there.. to get in the top 200.. that is still awesome achievement).
Great job to all those who were able to vote.
I have to disagree a bit with some of your parts. It was already sure i think after 1-2 days that WPI was kicked out and there was immediatly a big campaign for PANDORA. There was maybe a problem that we didnt focus on some other organisations and after some days when we saw that the support for other groups is really small we gave up and we were focusing only on PANDORA. So I think there was a big coordination of CFS group and a big campaign at least for PANDORA. I ask myself if WPI would get more votes. I think yes but I think not much more. I think even if WPI is our favorite they cannot do all work alone and we have to start to understand it. So I think the campaign for PANDORA was big and here wasnt a problem.
About to be too sick. You know I understand that someone who is so sick that he is even not able to make a small walk or turn on his compute and he is able only to read for some minutes (or even not) - its sure that these minutes he will use for a small contact with his friends or just read some articles and I can completely understand it that he will not participate. But I was not talking about these cfs patients. I would really like to know how many % from us are so ill - is it really so much 25%? but if yes there is still so huge community who is able to vote (even if this number would be 50 %). I was talking about the people who spent the hours by writing emails and they dont vote. They dont vote because they are too tired - they are some other reasons.
You know I hate facebook too. but we have to understand that for activities like this is facebook necessery to have. and we have to see our priorities. what is more important for us - to support cfs activities or to keep our hate to facebook? If someone think that he will lose his privat. he can just make a fictiv name with a new email adress which you never use (I did it at first also) and if he doesnt want to connect with his friends he just has his facebook account (but then he cannot invite his friends for voting,...what is also pity). So you have fictiv name with an email adress. then they ask you about your sex and age (this you dont have neither to answer correct ). then they ask you also some other questions but you dont have to answer. So with facebook account you dont lose your privat you have just to decide what is important for you. I tried to do the campaign on a lot of pages and I tried to explain everywhere this sentences about facebook what I wrote just here. So I think even if people have problem with facebook its not so bad - even I would say that the majority of cfs patients use facebook. so my question is would you do now with this small explication a facebook account or still not?
So I think the problem has to be somewhere else
Wow. I have to say I'm surprised to click on what was intended to be a celebratory thread and instead find people berating their own community for not doing better. What we did was very difficult for us as a community, and we accomplished that. We shoudl be proud of it, and encouraged by the result. Now we know for next time what a difference jsut a few votes can make, and perhaps next time can accomplish even bigger things. But for now, lets just remember that it was difficult but we did it. That's encouraging.
Emails are different from facebook. Much, much different. There are many things you aren't taking into account. The mental exhaustion and confusion of trying to figure out the ins and outs of a social networking site that you've never been to before. I don't know about you, but for me it takes a week or two before a new site is familiar enough to me to not cause confusion and exhaustion just trying to figure it out. Second, signing up to facebook means all of a sudden your friends, acquaintences, relatives, old classmates, old coworkers, and basically anyone who knows you in any way at all will begin trying to connect with you. A lot of people, including me, just can't handle that right now. Email is much more predictable, containable, and contains less trivial information to exhaust the brain than social networking sites. And sure, you can sign up and then jsut never use the account again, but then how do you deal with all those people who now want to get in touch with you and are insulted that you have seemingly rejected them? And you explain how ill you are, and they don't get it, and you have a huge stressful mess on your hands...
Finally, some of us are just not comfortable putting private information out there on a public networking site. Sure, you can use privacy settings, but there is a risk of those being hacked. For a population that's physically and cognitively weakened already, Internet security is even more important than for the average joe or jane. EDIT: Okay, so say you use a fake name and fake email....then the next time a campaign to vote comes along you're supposed to remember that fake name and email? So you have to have information on the fake name and email written down someplace you won't forget....I can't even do that for my online bank account, which is a necessity. Where are you getting the idea that this is such an easy thing?
I know that for my health, in my situaiton, with my contacts (who've been bugging me to join facebook for a while now) and my concerns, I should not attempt to join facebook at this time. It would be ridiculous for me to put such an immense burden on my health just for a few votes for grant money. While yes, it is very important to get that money for PANDORA and other organizations, my first responsibility is to my own health, and I cannot do anything that might jepordize that, even if it is for the greater good of the CFS comunity.
And by the way, I got in touch with two contacts who both voted and spread the word asking their contacts to vote. The energy it took to do that cost me, but it was a price that I could afford.....barely.
It'd be nice if we could encourage each other instead of basically accusing each other of being lazy. We already have enough ignorant healthy people telling us that....we don't need to hear it from PWCs too.
The original gameplan was to go for two charities: 1. WPI and 2. PANDORA. The big error lies in the organisation of the contest. They disqualified WPI after the contest was running already a few days. I don't think we need to be saying we had to had 2 organisations in the top200, because even PANDORA was a close call. It was a big fight those last days. If there comes a next time, maybe we can get 2 orgs up there. I'm a bit saddened by the low respons after informing different organisations: this forum, Prohealth, me/cvs.net, foggyfriend, actionmailing list, 10's of facebook groups and different pat. org.
but end good all good!
My post was really not for accusing the others - it was for encouraging the people - I only wanted to find the reason why the support was not bigger. You know I am really happy that we manage it but I am always thinking farther. My opinion is that if we will now "celebrate" next months without doing anything we will again lose a lot of months - so thats way I started to talk about this.
you gave some good points about facebook. now I will write you some sentences but please dont take it that I want to convice you to make a facebook account. its just only a discussion and noone will accuse you on the end if you will not do it. its just to better understand the problem.
if it takes you longer time to take/understand new networing site - just take your time. yes now it was a bit stresfull because we needed to get new votes really fast but it will be for the next time. if you also want - someone can make a facebook account for you. also if you are afraid that a lot of people will want to have contact with you - you dont have to accept them like friends. in this cace is good to have fictiv name with a new email adress which you never use. like this you will also not lose your privat. they will have your fictiv name, fictiv email adress and then they ask about sex and age - this can be also fictiv if you want. so even if someone would hack you - he will get no usufull informations. the question of forgetting the passwords,...I have a notes for it where I can find everything. so I really understand that the people here have big difficulties - I want only to say if you want and if there is only a small possibilty how to join some actions - dont be afraid justtry it and take your time - you dont have to hurry up
no one can network like preteens and teens...hence the harry potter. but bears?? wtf
we should give our charity a name with the word "twilight" in it lol
Okay first of all....I'm not afraid. I don't have a facebook phobia.
Second, there are many websites that I cannot tolerate at all. No matter how much time I have, it is sensory overload....I cannot figure them out, the visual effects are too much, there are too many options to learn to understand, etc. I've tried it with a different social networking site, and there was just no chance. Tried for months.
Third, you saying that I don't have to accept them as friend is like saying you don't have to read that email or answer the phone or answer the door or open that letter. But getting a large amount of attempted communication is stressful for me. Your solution is not a solution for me, because I'd feel terribly guilty about not talking with them, and it would go through the grapevine that I was not responding to them, and I would get guilt tripped, called, lazy, and recieve many requests for explanations. I could say no to all that, but saying "no" all day every day is stressful for me and would negatively impact my health.
I'm glad notes work for you. Listen, right now I have to work on a system to be able to remember even the most basic things like bank account passwords, and doctor's appointments. I've been working on that for years and still have not been able to get a reliable solution. You say you understand big difficulties but you don't seem to understand that if I can't even manage to work out a system for remember even vitally important information after years of effort on it then how do you think I should be able to remember a fake name and email?
I'm not going to "just try" it. That's like a doctor telling a CFS patient to "just try" doing more activities. It would be harmful for me to try it, that is why I will not do so at this time. Please respect my limitations even if you do not understand them. Thank you.
sometimes its really difficult to talk by internet because there are a lot of misundersting. to talk face to face its much bette because you can react at once and to explain everything better.
but well, its not possible
this is just a discussion to find out where the problem is and if its possible that also the sickesst cfs patients can join some cfs activities with a help of other patients. and after this discussion we can also understand better the difficulties of the sickesst. and if we will find on the end that the help of the sickesst is not possible - you will still have our big respect and if I can make some small activities I am doing it also for this group without waiting for thanks or accusing someone of passivity because I am really thankfull that i am able to do it.
How I already say you gave me some good points to understand some problems and this was the aim of this discussion. I did some small proposition and it was not aspecially for you it was just in general and if someone will find that maybe with my propositions its possible it will be good and if not I can also understand and I also understand your explication.
Also your point about that its stresfull for you to get a larg amount of attempted communication - i can understand it good. For this can be good fake name and email. so no one will know that you have a facebook account (only if you would say it) and so no one will want to communicate with you throught facebook. Again with this sentence I dont want to force you to have facebook. You made a good point about a problem and I tryied to find a solution for it for someone who will read this thread and maybe for him it can be usefull.
You are right that i cannot imagine so good the problems with brain because I dont have these problems. but after your answers i can better. And again my proposal with notes - it was just proposal and everyone can decide alone on the end and maybe for someone it will work.
how I already said this thread is for trying to find a possibility if the sickesst patients could help us (you know I already got some possitiv answers and they take it like a good possibility to realise themself) and if its not possible - just pity nothing else. then we can know if the things like frank instructions video is usefull and if to do it the next time
Yes Dainty, this is how I feel. I opened my new Facebook account for this contest. I "friended" one person on this list so that we could share gift votes. That night I got a request from my mother in law to be my friend. My husband didn't understand why I was upset. It's because I don't want to have the stress of being obligated to communicate with someone. It takes energy. Energy that I don't want to spend in dribs and drabs when I barely have enough to function.
I do have to say that I am glad I did the Facebook thing. I am glad I was able to reach out to some folks and get them to vote. I used the list of CFS charities to place my 20 votes, so that was the easy part. It was connecting with others that was the hard part. But I found a couple old friends while I was on it. And it was gratifying how much my friends and family wanted to help with the vote. It made feel valuable. That is a rare feeling for people with this illness.
I think I will keep the Facebook page. I won't populate it with information or pictures, or become a Facebook junkie. But I will use it once in a while to reach out to family and friends. One of the benefits is to look at pictures of my Grandkids. I probably wouldn't comment on them but it is nice to see updated photos once in a while.
Why don't we do better( how to improve)
Of coarse we should rejoice at a victory here. The people on thread probably spent there limited energy to garner hundreds of votes. Thank You:Retro smile:
I just get frustrated because if there are 1-4 million people with CFS in this country plus 500,000 accross the pond in England then why only 1500 votes? Why aren't we winning the 250,000 and not the Harry Potter Alliance? I agree,we need to ask why and be able to critique ourselves and improve.
Of course we are a very ill population. That is definetely a part of the explanation but with the numbers of people with CFS plus there healthy caregivers and family it can't be the only reason we don't do better.
Could it be lack of communication/ getting the word out? I'm not sure. It seems Pandora, the WPI and the Cfids association got the word out as well as Cort on this site and many other members who posted on other related CFS/Fibro sites. The Cfids association has over 4000 fans that could have all voted 20 times for cfs orgs and sent gift votes to each really vote twice. Plus each one of these people has at least one family member or caretaker they could have asked to vote.
I wonder are we afraid to ask people for help because it would mean bringing up the fact we have this illness and we know how people might treat us? I know I was really afraid to ask my healthy friends to vote because I thought they might scoff at me for bringing up an illness they don't understand.
I kind of think we've been beaten down for so long and in so many ways that we've kind of as a population recoiled into ourselves. We know we will support each other but we also have learned that the rest of the world for the most part will abuse us in some way. So I think we aren't used to banning together on something outside the safety of our own community.
I think as far as advocacy goes we really have gone backward though. I remember back in the day when The CFIDS Association had over 20,000 members now they have like 3000. I remember people protesting in the Capital in Boston in the street in the 80's and 90's for CFS on awareness day. That has not happened in along time even though XMRV has arrived. We've really slipped in our organization and advocacy since then.
Another idea which has always been floated around but never acted on is having a celebrity spokesman. WHy has this never happened? Most big illnesses have a celebrity spokesperson to help bring awareness/ raise funds. Michael J Fox as an example. It should have been CHER for us but she wimped out. But if we had a popular actor or athlete as our spokesman it would do wonderful thing for our abilty to rause awareness/funds and gather support from the public. It would be a rallying point for us.
Now we are regaining our momentum again because of the XMRV discovery. This is our time to join back together as a community, communicate better and get out and become more visible again.
I also feel a protest or demonstration would be really helpful or a day of national protests as well as an increased membership in a cfids organization which focuses on advocacy. (IF not the CFIDS Association then PANDORA or PHOENIX RISing. Also if we could connect more with advocacy groups/ME groups overseas and let them realize there best hope is to stay engaged in the happenings over here. Whether it be a contest like the Pepsi Refresh or a decision by the HHS. There hope overseas currently lies in the U.S.
Let's kick but in the PEPSI REFRESH Contest! Ask for help from anyone and everyone. The Lyme community, Fibro community, GWS community, ME groups. We are an enormous group and if we could just organize and communicate as one voice we could accomplish sooooo much more!
Lynn this too is my worst nightmare, I joined facebook in the winter, trying to find someone from my past, I did but then realised that at this moment in time I really couldn't face making contact, only another with ME could understand that. However I never put a picture on and that makes it so difficult for others to find you, I.ve never been bothered by anyone thus far. I was so pleased it was there though because despite not feeling well I was able to vote for pandora easily. Feel really chuffed they have won some money, we can make things happen.
How did hp alliance do it? Twitter
Someone on pandora fb said we did great for people with no endurance which made me feel better.
I looked for hp alliance on fb and their group was relatively small. On their regular website they had an easy direct link.
Remember we had a hard start thinking wpi was in, then having to switch gears, and pandora is a small group. when it happens with wpi i think we have more opportunity with the link to xmrv. pandora didn't outwardly link with that yet.
i think i found hp here. thehpalliance.org. their page says all the things they did. contacting every member groups website, fun youtube videos, (see the crowd cheering at the end) celebrities of all sorts and twitter. i think getting some twitter going with health groups would be great, even if we don't twitter now, joining and signing onto groups gets you followers, and then when we need it we would have it.
We could twitter, NIH confirms XMRV. XMRV in xxx diseases. we need to hook up with hiv groups and prostate cancer groups for drug development, research funding.
thanks greatly for this post Dainty.. it explains all the issues i have. thanks
(im feeling a little bad now as i snapped at Tuha at another thread over this.. the burden of others contacting you when you need to conserve energy to stop yourself from getting sicker or the burden of lying to them (i have Asperger's so cant tell lies) so they dont find out you had a facebook account even for a short time). i just could not do that.
Then getting joined up and signed into a new site.. is often a nightmare for me as my brain struggles to work esp when it comes to anything new..its only on very good brain days can i do that without it affecting me.
You can also try a Google Site Search
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