Funding our research 2

caledonia

caledonia

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Aileen said:
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 ..."
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I think this is an awesome idea. I think the only way we're going to get a celeb is to network our way in. Ever heard of the Six Degrees of Kevin Bacon? Supposedly, everyone is only 6 people away from knowing anyone.

Would you respond better to a message from a friend of a friend of a friend, or a letter out of the blue from someone you don't know?

Maybe not even contact a celeb at first, but maybe a celeb's maid, hairdresser, makeup artist,etc. They may be able to identlify people for us.
 
patient.journey

patient.journey

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caledonia said:
I think this is an awesome idea. I think the only way we're going to get a celeb is to network our way in. Ever heard of the Six Degrees of Kevin Bacon? Supposedly, everyone is only 6 people away from knowing anyone.

Would you respond better to a message from a friend of a friend of a friend, or a letter out of the blue from someone you don't know?

Maybe not even contact a celeb at first, but maybe a celeb's maid, hairdresser, makeup artist,etc. They may be able to identlify people for us.
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So what do you think of the best way to connect those celebrities ? Twitter, Facebook, throw some shows or do you have other ideas ?
 
caledonia

caledonia

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No, actual networking, between people who know each other. You can use work connections, friend connections, relative connections or whatever.

Let's say we wanted to get in touch with Ellen Degeneres. Wikipedia is a goldmine for finding connections. She grew up in Metrairie, Louisiana. She has a brother, Vance. She went to Atlanta High School and Grace King High School. She has a cousin, Laura. She started out performing standup comedy at small clubs and coffeehouses. She is a lesbian. Her show is filmed in Burbank, CA, so presumably she lives in LA. She's worked in films, comedy, acting, etc.

Does anyone on this board know anybody even remotely linked to Ellen - grew up in the same town, went to the same school, worked at the comedy club, knows someone who knows one of her relatives or one of her domestic partners, knows someone who knows her via a lesbian organization, knows someone who knows someone who worked with her on a makeup commercial, etc. The possibilities are many.

I would actually suggest not having a certain person in mind. What we want is behind the scenes "dirt" on celebs. We need to identify which celebs have a friend or relative with ME/CFS, or who has a mysterious fatiguing illness. So we need to find a friend of a friend of a friend who, say, works in the film industry in LA who would have this kind of inside knowledge.

We should also form a private group so we can work on this, but the info is not broadcast all over the internet.
 
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taniaaust1

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Omar88 said:
You really should calm down !!

I know what are you saying but its not my mistake that you guys were ignored, we are in the same group so why are you attacking me or the people who are trying to do something?! the people who ignored you ignored us too !!

I know you have been on this before me and its looks like you tried all of this and didn't get what you thought is coming from it but that wont stop us from doing it again.

Hope you get better again and see what i meant in another way.

Thanks
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Sorry Omar.. Im back again now... had to avoid the site till "my" emotional issues settled (and I was trying to function at a level beyond exhaustion too..that level of exhaustion is a trigger for me too). I know you arent the issue and I was struggling very much to stay rational with my hormones as as you can see the avocacy is an emotional trigger for me.

I know you have been on this before me and its looks like you tried all of this and didn't get what you thought is coming from it but that wont stop us from doing it again.
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Its not that I never got what I "thought was coming" as my expectations in this area have always been low (if getting change with our illness was easy, it would of happened long ago!!). But rather just the time and the degree Ive exhausted myself over it all and I just keep on exhausting myself over it. Im not about to give up on advocacy etc and never will unless Im dead. I take myself to my limits (and over) doing it.

I'll go and delete those aweful posts I put up here if the mods already havent.
Back now and calm :)

edit. I deleted one post and toned down another.. (its up to you if you want to remove your responses to my posts or not).
 
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taniaaust1

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Tally said:
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.
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I think it all depends on what the person has and hence what they are calling the disease they have. "Chronic Fatigue Syndrome".. where I are, most have heard of that or if they havent they do get negative misconceptions just from the name. Ive found that to be so over and over again. Its cause of the misconceptions of this disease, its why an illness affecting so many and many seriously too has been ignored. General society has misconceptions when they hear of CFS.

Im very surprised to hear someone here say that society hasnt got misconceptions over chronic fatigue syndrome that certainly isnt what most of us have experienced (Ive lost friends over the misconceptions to do with this illness, over the knowledge they had from general publics views on this illness).
 
patient.journey

patient.journey

Senior Member
Messages
443
caledonia said:
No, actual networking, between people who know each other. You can use work connections, friend connections, relative connections or whatever.

Let's say we wanted to get in touch with Ellen Degeneres. Wikipedia is a goldmine for finding connections. She grew up in Metrairie, Louisiana. She has a brother, Vance. She went to Atlanta High School and Grace King High School. She has a cousin, Laura. She started out performing standup comedy at small clubs and coffeehouses. She is a lesbian. Her show is filmed in Burbank, CA, so presumably she lives in LA. She's worked in films, comedy, acting, etc.

Does anyone on this board know anybody even remotely linked to Ellen - grew up in the same town, went to the same school, worked at the comedy club, knows someone who knows one of her relatives or one of her domestic partners, knows someone who knows her via a lesbian organization, knows someone who knows someone who worked with her on a makeup commercial, etc. The possibilities are many..
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Those are great ideas thanks !
So know could you guys help to make a list of 10-20 people that we should target am not from USA and i dont know all the celebrities there so that would help me to start stalking them
 
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