Cfs/me e-petition. Is there one?

[knackers323]

Anyone know? I get them sent to me all the time for all different types of causes. They seem to be pretty successfull.

 

[tiredchris]

Hi,I'll NEVER KNOW W-H-Y ME/CFS/FMA Sufferers in the UK, Don't bother going onto the Prime Ministers website www.number10.gov.uk & Tell him (David Cameron,MP), That You're NOT Going to Vote For Him & the Conservatives Unless he puts a decent ammount of £££ Into CFS/ME/FMA Research !!!
We Have VOTES !!!

 

[DanME]

Good question. I will have a look the big petition sites. If there is no petition, we should start one!!!

 

[Gingergrrl]

The biggest site I know is Change.org and I sign their petitions all the time. They are very powerful and many laws have been changed due to those petitions.

If we created one, we'd have to really focus on what we were asking for? I guess more funding for biomedical research or more education for the public?

 

[DanME]

I ve just looked up change.org. They can be really successful. Some petitions of them skyrocket in Germany and lead to changed laws, better payments for nurses, the abolishment of plastic bags in supermarkets and so on (Germans really hate plastic bags Usually you need a critical mass of at least 30.000 supporters to gain attention.

They have been several ME/CFS petitions for the last couple of years with more or less success at change.org. The numbers they generated were between 150-1800.

They are other petitions sites, even more powerful, which concentrate more on environmental and geopolitical issues. Avaaz.org is one. They often combine petitions with fund raising. They are more professional and focused, but filter their content.

Campact in Germany is so powerful, that usually over half a million people support their petitions, sometimes even millions. They are so popular, that they were able to bring very big and unfortunate laws to fall.

Change.org accepts everything. I think we should demand specifically more funding for biomedical research from the US or UK government for a start. The petition must be quite professional. A video explaining the big CFS mess would be a good idea.

The internet can be extremely powerful, if you do right. The big question is how! My biggest dream would be a kind of overview and news page, where everything comes together. An interconnection between all the charities, advocacies, patients groups and so on. Imagine what we could pull of with a site, where 20.000 ME patients come together. Crowdfunding, petitions would be so easy to start!

 

[*GG*]

Why not the German Gov't @DanielBR ?

GG

 

[knackers323]

Maybe we should petition the UK gov to release the file they supposedly have on CFS that was due to be opened recently but has now been resealed for another 99 years.

 

[Sushi]

There have been many, many online petitions over the years.

Sushi

 

[knackers323]

There have been many, many online petitions over the years.

Sushi

What results did they get

 

[Gingergrrl]

I ve just looked up change.org. They can be really successful.
Change.org accepts everything. I think we should demand specifically more funding for biomedical research from the US or UK government for a start.

@DanielBR I think Change.org is the most well-known and widely used site and that it is world-wide (not just U.S.) but I could be wrong?

@Sushi I have the same question as knackers- do you remember what kinds of petitions were the most successful and how we'd go about initiating something like this?

 

[Sushi]

What results did they get

@DanielBR I think Change.org is the most well-known and widely used site and that it is world-wide (not just U.S.) but I could be wrong?

@Sushi I have the same question as knackers- do you remember what kinds of petitions were the most successful and how we'd go about initiating something like this?

I don't remember any of them as being particularly successful (or really having much effect at all). I just remember signing a lot of them. Others will probably remember better than I do.

Edit: We even had a message in lights on the huge moving billboard in Times Square once.

Sushi

 

[Sushi]

You might want to read this thread to see some of the ideas used in the past. The story about the billboard is here, but the link to the photo is broken.

Sushi

 

[Sasha]

One thing that I've noticed with ME/CFS petitions on the 10 Downing St site is how poorly written they have been - spelling errors, grammatical mistakes and so on. Anyone can start a petition and people have done it without getting their text looked over so that it looks professional, and I think that that undermines any campaign.

The numbers that have signed have been relatively small. Maybe we need to be doing this off the back of the launch of Ryan Prior or Jen Brea's film and for the petition to come from them.

 

[DanME]

Maybe we should petition the UK gov to release the file they supposedly have on CFS that was due to be opened recently but has now been resealed for another 99 years.

?? Do have a source?

 

[knackers323]

Just search on the net for it. It's mentioned lots. There are even many threads about it here on PR.