Funding our research 2

[snowathlete]

I guess we would need to come up with a profile for the type of person we would want and then see who matches it.

 

[patient.journey]

I guess we would need to come up with a profile for the type of person we would want and then see who matches it.

OK, Am thinking of people who could be a celebrity and working at the UN in the same time or such organization,,

I don't have a lot in mind but some one like Angelina Jolie, Oprah Winfery they worked with UN departments and they are celebrities too.

More names are here i need you guys to look and make Suggestions :

http://en.wikipedia.org/wiki/List_of_UNICEF_Goodwill_Ambassadors
http://voices.yahoo.com/seven-celebrities-work-human-rights-5768512.html
http://www.hollywood.com/news/Celebs_Discuss_Work_for_UN/312864
http://goafrica.about.com/od/workinafrica/a/Celebrities-And-Africa.htm

Those are celebrities are helping with AIDS:
http://www.looktothestars.org/celebrity

Look at those commercials for celebrities talking about AIDS:

Something like this will be great for us

 

[taniaaust1]

We could send a MSG having a long list of signatures on it from sick people and we could figure out other ideas like making an appointment and visiting but for now is there a specif names that we should go to ? or should we just try different doors until one of them will be open !

You quoted the above to my post about getting celebreties involved.. Its completely confused me as with big celebritaries one cant just go visiting them or making appointments with them.. (things like that would only ever be possible if someone really got their attention and interest in the first place by contacting them and getting throu to them).

 

[taniaaust1]

I don't have a lot in mind but some one like Angelina Jolie, Oprah Winfery they worked with UN departments and they are celebrities too.

Oprah Winfrey I know has already been tried in the past. Quite a few different ME people have wrote to her over the years (some from this website) trying to get her interest in ME and at that time also hoping to get her to do a TV show on it... all without any luck at all there. So she can be crossed off the list. (she's just another media spokesperson who ignored our plight). I'd forgotten about her and all that until you brought her name up.

 

[taniaaust1]

I think we need a face for ME. It doesn't neccessarily need to be a celebrity. If we make a video about ME/CFS people can't connect emotionally with a disease. But if we put a person in spotlight people might be more compelled to help. What do you think?

That's exactly what already has been done with "Voices in the Shadows" I think it was called (something like that). It was a heart moving video about ME/CFS people so that people can connect better emotionally with the disease. I think this may be still available.

Or are you talking about some campain where just ONE ME persons case is put out in the spotlight? (that has kind of happened in the past eg when Sophia Miza died .. and that made media headlines all over for a while.. that thou didnt change the ME stuff at all and England is just as bad as it ever was.

 

[patient.journey]

You quoted the above to my post about getting celebreties involved.. Its completely confused me as with big celebritaries one cant just go visiting them or making appointments with them.. (things like that would only ever be possible if someone really got their attention and interest in the first place by contacting them and getting throu to them).

You are just make it more difficult trying again wont hurt us, trying to reach them or doing any thing of oprah didnt replay there are lots of other people we can try to.

Just try to be POSITIVE if we tried this and didnt work should we stop ?! why we are testing again and searching for a treatment again and again ?!

Its our life and we suppose to continue trying !!

 

[Tally]

Or are you talking about some campain where just ONE ME persons case is put out in the spotlight? (that has kind of happened in the past eg when Sophia Miza died .. and that made media headlines all over for a while.. that thou didnt change the ME stuff at all and England is just as bad as it ever was.

I'm not sure actually. It can be one person or many. But a whole campaign should revolve around them. One video is not enough.

When I think of viral campaigns that helped - it was always helping one person and not a general cause. The first thing that pops to my mind is the story of the bullied school bus monitor (http://www.forbes.com/sites/anthony...and-the-paradoxical-public-will-to-make-good/) - people had the need to help HER, and not some cause even though it might help more people who are in even bigger problem. Article said 280 thousand dollars were collected. Far more than we can collect for CFS/ME research even though it could help millions of people.

Please don't misunderstand, I am glad she got the money. I am just saying we should copy the succesful campaigns. People found out about her without any money being spent on the campaign - it was spread through social networks. Maybe we can do the same if we choose the right person to be the 'face' of CFS/ME.

 

[Aileen]

someone young who has their whole life ahead of them, but who has been sick for quite awhile. Also needs to be a very sick patient. Humm... isn't there someone in NZ or OZ who is bedbound in constant pain with migraines and can't get help and is desperate and the health care system, health minister, everyone has failed to help. What about this person? She could use the intervention.

 

[snowathlete]

I think we need to be thinking more radical and original - we need someone who is the complete opposite of us. Not someone sick. Someone with lots of energy and charisma. With their life before them and great future because that's the contrast to us. We used to he like that. This illness has robbed us of that, and it could strike anyone like this 'person' in their prime. That's the person we need. Need to identify and work out a way to get them onboard.
We need several candidates because celebs aren't easy to get in contact with and it's hard to get their interest. Not impossible though, you just need to be creative.

 

[Tally]

I think we need to be thinking more radical and original - we need someone who is the complete opposite of us. Not someone sick. Someone with lots of energy and charisma. With their life before them and great future because that's the contrast to us. We used to he like that. This illness has robbed us of that, and it could strike anyone like this 'person' in their prime. That's the person we need. Need to identify and work out a way to get them onboard.

This would be playing on people's fear that they might get sick too. What would compel people to donate money more, fear of getting sick themselves or feeling like they are making a difference in someone's life who is suffering?
I have no idea We need an expert I think...

 

[taniaaust1]

You are just make it more difficult trying again wont hurt us, trying to reach them or doing any thing of oprah didnt replay there are lots of other people we can try to.

Just try to be POSITIVE if we tried this and didnt work should we stop ?! why we are testing again and searching for a treatment again and again ?!

Its our life and we suppose to continue trying !!

But why keep trying with one who has been tried before but had no interest at all in ME/CFS when there are HUNDREDS of different celebrities which could be approached and who havent been. I myself dont want people to be wasting the small amounts of energy they do have trying something which didnt work (she dont even now have her tv show anymore). when there is so many others which havent been tried yet. I dont understand your reasoning.
We need smart tactics when doing things which have the MOST CHANCE of working.

I wasnt trying to be negative but just telling you what has been tried already so people are more likely to succede by trying new ones. People get discouraged with too many failures esp when they are doing things while they are so sick.

 

[patient.journey]

But why keep trying with one who has been tried before but had no interest at all in ME/CFS when there are HUNDREDS of different celebrities which could be approached and who havent been. I myself dont want people to be wasting the small amounts of energy they do have trying something which didnt work (she dont even now have her tv show anymore). when there is so many others which havent been tried yet. I dont understand your reasoning.
We need smart tactics when doing things which have the MOST CHANCE of working.

I wasnt trying to be negative but just telling you what has been tried already so people are more likely to succede by trying new ones. People get discouraged with too many failures esp when they are doing things while they are so sick.

I wont post again on this thread as obviously you dont appriciate me sharing what has already been done to try to help people succede in this area. I thought you'd be greatful to know what had already been tried.

Sorry if rather then seeing I'm trying to be helpful so we hope more chance of success.. rather you prefer to see me as being negative. I'll leave you be. Best luck in whatever you try.

WOW you went far away and i don't why !!

What ever you are saying about people who tried this before, does it matter if we are going to try it again ? maybe it will work this time ! maybe if we tried to reach 100 or 1000 people 1 of them will stand for us.

Dear Tania we are just ignored and we have two choices one is trying again and two is trying something new that what we could do.

I know that a lot of people didn't try this before and i wont forgive my self after 10 years if some one came and tried this and he could make a change that i could did now but i didn't because some people told me it wont work.

Its your choice to participate or not and if you have other ideas of how we could help our selves we will be happy to hear

 

[patient.journey]

This would be playing on people's fear that they might get sick too. What would compel people to donate money more, fear of getting sick themselves or feeling like they are making a difference in someone's life who is suffering?
I have no idea We need an expert I think...

Fear would make some people really of this, knowing that one day they could be us would encourage them to work

 

[Tally]

Fear would make some people really of this, knowing that one day they could be us would encourage them to work

But I'm thinking if fear worked, then people would never smoke cigarettes. People probably think: "It won't be me."

 

[snowathlete]

This would be playing on people's fear that they might get sick too. What would compel people to donate money more, fear of getting sick themselves or feeling like they are making a difference in someone's life who is suffering?
I have no idea We need an expert I think...

My suggestion is more about getting people to associate us with normal people, which i thonk is important because of the misconceptions society has about us already, more than making them fearful of ending up like us, but I agree that is one thing that people might take from it too.

 

[Aileen]

Just a thought. Look what Michael J. Fox has done for Parkinson's Disease. He is very committed, knows what he is doing and how to get things done, knows a lot of well-known people and as a patient can relate to how we feel. He has his hands full with his own disease but perhaps if asked he could point us in the right direction. Maybe suggest someone who may want to help, or put us in touch with someone who can guide us in the process (without charging a fortune)? Give us some pointers? Indirect help is better than no help.
Perhaps there are others like him who could also be approached with the same requests. "We understand it is not possible for you to help us directly, but we were wondering if ..."

 

[Tally]

My suggestion is more about getting people to associate us with normal people, which i thonk is important because of the misconceptions society has about us already...

I don't think society has misconceptions about us. Doctors, psychiatrists and people who have at least some experience with this disease might. But from my experience, majority of general public has never even heard of the disease.

I think we should act like it was never even a question if it is real disease or not, instead of trying to prove that it's real.

But I understand what your point is. And it should definately be taken into account when choosing a person who can be our spokesperson, whether they are one of the patients or not.

 

[patient.journey]

But I'm thinking if fear worked, then people would never smoke cigarettes. People probably think: "It won't be me."

Cigarettes make some people feel good illness wont ever make it

 

[patient.journey]

Just a thought. Look what Michael J. Fox has done for Parkinson's Disease. He is very committed, knows what he is doing and how to get things done, knows a lot of well-known people and as a patient can relate to how we feel. He has his hands full with his own disease but perhaps if asked he could point us in the right direction. Maybe suggest someone who may want to help, or put us in touch with someone who can guide us in the process (without charging a fortune)? Give us some pointers? Indirect help is better than no help.
Perhaps there are others like him who could also be approached with the same requests. "We understand it is not possible for you to help us directly, but we were wondering if ..."

The thing is most CFS/ME patient doesn't have that power to stand for there group but some are better and could do something !

If we found such a person that will be great i will be happy to hear any names from you

 

[patient.journey]

Did any one of you guys thought of any name ?!

Next step will be wondering how to contact with them and trying to write a proper MSG