eric_s
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I agree, i would also find it a good idea for Cort to send a mass email through the forum in this way.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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- Thread starter Sasha
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eric_s
Senior Member
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I have an update about the German situation, if you're interested (i said i would contact them some days ago).
I know somebody from Bndnis ME/CFS there, that's an organisation that comprises Fatiagtio e.V. (the big association), CFS Aktuell (an information and news site) and some other organisations and people.
She told me that Fatigatio unfortunately doesn't want to put a call to vote in their mailings. But they posted about it on Fatigatio's forum and she will talk to CFS Aktuell and Bndnis ME/CFS to see if they can put it on their websites and/or somewhere else.
She said at the moment there are around 60 persons voting from Germany, Switzerland and Austria (at least that she knows of).
I know somebody from Bndnis ME/CFS there, that's an organisation that comprises Fatiagtio e.V. (the big association), CFS Aktuell (an information and news site) and some other organisations and people.
She told me that Fatigatio unfortunately doesn't want to put a call to vote in their mailings. But they posted about it on Fatigatio's forum and she will talk to CFS Aktuell and Bndnis ME/CFS to see if they can put it on their websites and/or somewhere else.
She said at the moment there are around 60 persons voting from Germany, Switzerland and Austria (at least that she knows of).
eric_s
Senior Member
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Then Spain:
I have talked to the owner of http://www.sfc-em-investigacion.com/ and he said he will put a text on his forum. So now i will try to make a Spanish translation of your text, Sasha, that will be more or less ok, so that he only has to correct it a bit and can post it.
Then i can contact some Spanish organisations.
Regarding Switzerland, i will talk to people of the association here about it in the coming days. They have a website and a forum for members of the association. The association has somewhere between 200 and 300 members. Of course not everybody has Facebook, some don't even have internet access, but maybe we can win at least some more voters.
I have talked to the owner of http://www.sfc-em-investigacion.com/ and he said he will put a text on his forum. So now i will try to make a Spanish translation of your text, Sasha, that will be more or less ok, so that he only has to correct it a bit and can post it.
Then i can contact some Spanish organisations.
Regarding Switzerland, i will talk to people of the association here about it in the coming days. They have a website and a forum for members of the association. The association has somewhere between 200 and 300 members. Of course not everybody has Facebook, some don't even have internet access, but maybe we can win at least some more voters.
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We have to keep focussing on our main chance of serious money, the Whittemore Peterson Institute. If a week is a long time in politics, it's even longer in these voting competitions. Vivint goes on until the end of August, for goodness sakes. That's over eight weeks away - we are not even a quarter of the way through, despite what I said in my last post.
Any other strategy at this time risks total failure to gain any prize money for our community at allI am totally serious. This is totally serious. We have a responsibility to do everything we can to ensure we get some funding, with all the efforts we are making.
How would you feel if no ME/CFS charity made it, in the end, to the top of any of the boards?
If you want a quarantee of funding for the community, then vote for the National ME/FM Network. The Canadian region doesn't have the risks of the Pacific region.
If one is looking at risks: there is the risk that the National ME/FM Network might not even be in the running at the end while the WPI looks like it has a very good chance.
Hi again, May 12th. You never did answer my question about the crystal ball. Do you have the ability to see the future? I don't. How do you know that one of the Canadian charities won't pull some rabbits out of hats near the end? I found a website on facebook where blocks of votes (looked like from the middle east, in this case) were for sale, and we know that some of the Chase contestants zoomed up at the last minute, some using bought votes from India. This could happen in Canada too - $100,000 is an incentive to spend $5,000 buying votes, no?
This is one reason why the WPI needs the biggest lead it can get. There are others. We, a sick community, living on low incomes, cannot fund any of these kind of shenanigans, but don't you ever believe other charities won't stoop to purchasing thousands of votes.
Why not look for new voters, people who are friends and family of your people, to up your votes for NME/FMAN? Why come on our facebook pages, stalking our advocates, touting and poaching? Please try and find new voters and increase the total number of our combined votes, instead of robbing Peter to pay Paul.
I'm not ruling out helping your cause myself, but I won't even begin to think about it until we are a lot nearer to the end of the contest.
I say again. Split the vote at this stage and risk the lot.
This is one reason why the WPI needs the biggest lead it can get. There are others. We, a sick community, living on low incomes, cannot fund any of these kind of shenanigans, but don't you ever believe other charities won't stoop to purchasing thousands of votes.
Why not look for new voters, people who are friends and family of your people, to up your votes for NME/FMAN? Why come on our facebook pages, stalking our advocates, touting and poaching? Please try and find new voters and increase the total number of our combined votes, instead of robbing Peter to pay Paul.
I'm not ruling out helping your cause myself, but I won't even begin to think about it until we are a lot nearer to the end of the contest.
I say again. Split the vote at this stage and risk the lot.
eric_s
Senior Member
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CFS Info, i hope the National ME/FM Action Network will also make it to number one. But i think it's true that we need many more voters in total. Only then can we have at least some degree of certainty for both.
Can you try to contact any local group in Canada? And ask any potential voter to also ask family and friends. Explain to them how important that funding is to more than 1 million people. And how little we are getting from governments compared to other groups.
I know the president of Liga SFC in Spain a bit and she's also Canadian. I hope she will be able to bring in additional voters from her organisation and their network. With some luck a number of those will go to the National ME/FM Network, i really do hope so. I'm Canadian myself, by the way (and Swiss).
Can you try to contact any local group in Canada? And ask any potential voter to also ask family and friends. Explain to them how important that funding is to more than 1 million people. And how little we are getting from governments compared to other groups.
I know the president of Liga SFC in Spain a bit and she's also Canadian. I hope she will be able to bring in additional voters from her organisation and their network. With some luck a number of those will go to the National ME/FM Network, i really do hope so. I'm Canadian myself, by the way (and Swiss).
Votes from midnight eastern time/10pm Mountain time last night - incl. increase over previous 24 hours.
Pacific:
Whittemore Peterson Institute: 18627 + 967 = 19594
Be Perfect Foundation: 7855 + 190 = 8045
Conejo Valley Friendship Circle: 6471 + 150 = 6621
Surfers Healing 5166+165 = 5331
Canada:
Light and Love Home- Vancouver 11103+515= 11618
Saint John Regional Hospital Foundation 5194 + 154 = 5348
6th: National ME/FM Action Network 2093 + 150 = 2243 (they have still not gone over 200)
Overall (groups ahead of the WPI):
Foundation for Angelman Syndrome Therapeutics (FAST): 43946 +2375 = 46321 (top scores are dropping a bit - perhaps it's just the July 4 weekend or perhaps the top two aren't pushing each other as hard; or perhaps there was a problem with voting for a period?)
Team Sanfilippo Foundation: 43304 + 2313= 45617
CHERUBS: 29152 + 1210= 30362
International Rett Syndrome Foundation 21595 + 1062= 22657
Journey 4 A Cure Inc 20382 +1091 = 21473
eric_s
Senior Member
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- Switzerland/Spain (Valencia)
You're welcome. After these, i can contact some more, but then i will be starting to run out of adresses too...
frenchtulip
Senior Member
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- 760
Facebook page to announce ME/CFS/CFIDS Online Contests?
I haven't read all of this thread, but would it help to have a Facebook page that keeps current with ongoing online contests to benefit ME/CFS/CFIDS and related illnesses? Pertinent info about the contest E (e.g., whether you must be a U.S. resident) would be included. There could be a link on the Contest page to a translation tool which could easily be accessed to translate info into various languages.--Doesn't Google have one? The ME/CFS/CFIDS organizations which are on Facebook could be contacted to see if they would "Like" the Contest page so that any new info would flow through their pages (I think that's the way it works). Perhaps they could also a provide a link to the Contest page for those who check their organizations's page infrequently. I'm not very skilled with Facebook, but I wanted to throw out this idea in case it has any potential. It takes a lot of effort to contact numerous organizations for each contest.* This Contest page would be a bulletin board for contests in any country which benefit ME/CFS/CFIDS.
* I emailed probably between 100 to 150 ME/CFS/CFIDS organizations in the Chase Contest and did perhaps a greater number of posts on Facebook pages of various ME/CFS/CFIDS organizations. (A couple of times I got blocked by Facebook for a couple of hours from making posts on "public" pages).
I haven't read all of this thread, but would it help to have a Facebook page that keeps current with ongoing online contests to benefit ME/CFS/CFIDS and related illnesses? Pertinent info about the contest E (e.g., whether you must be a U.S. resident) would be included. There could be a link on the Contest page to a translation tool which could easily be accessed to translate info into various languages.--Doesn't Google have one? The ME/CFS/CFIDS organizations which are on Facebook could be contacted to see if they would "Like" the Contest page so that any new info would flow through their pages (I think that's the way it works). Perhaps they could also a provide a link to the Contest page for those who check their organizations's page infrequently. I'm not very skilled with Facebook, but I wanted to throw out this idea in case it has any potential. It takes a lot of effort to contact numerous organizations for each contest.* This Contest page would be a bulletin board for contests in any country which benefit ME/CFS/CFIDS.
* I emailed probably between 100 to 150 ME/CFS/CFIDS organizations in the Chase Contest and did perhaps a greater number of posts on Facebook pages of various ME/CFS/CFIDS organizations. (A couple of times I got blocked by Facebook for a couple of hours from making posts on "public" pages).
SpecialK82
Ohio, USA
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- Ohio, USA
Great idea frenchtulip!! The fact that we have no good way to disseminate information quickly is killing us. Maybe we could also include other high action alerts on there as well.
I guess the only problem I can see is who will be updating the facebook page? I would love it to be a place where we could all come together, the in-fighting and politics is a huge obstacle standing in the way to all of us getting well, we need to be smart and unite together, think together (discuss & debate) and then all act together!
I guess the only problem I can see is who will be updating the facebook page? I would love it to be a place where we could all come together, the in-fighting and politics is a huge obstacle standing in the way to all of us getting well, we need to be smart and unite together, think together (discuss & debate) and then all act together!
I agree, great idea, frenchtulip! I was saying a while back that the ME community needs some sort of "batsign" for when we need joint action, like the people of Gotham City use to alert Batman when they need him! Your Facebook page could be it.
I think we need that Facebook page now, while we're still in the relatively early days of the Vivint contest - and it would be great to alert people to its existence and get them to sign up to future new alerts.
I think we need that Facebook page now, while we're still in the relatively early days of the Vivint contest - and it would be great to alert people to its existence and get them to sign up to future new alerts.
SpecialK82
Ohio, USA
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- Ohio, USA
We are all a bunch of sick people on here, strategizing on how to maximize the benefits of this contest. Disagreements will occur and that's great, we can all discuss the merits, that will make our decisions stronger. But let's cool it on the personal attacks, it's counterproductive.....
Great work, frenchtulip, e-mailing all those organisations and posting on lots of Facebook pages. :Sign Good Job:A page would be good but I won't be volunteering to do it.
FYI: Co-Cure is an "old-fashioned" E-mail list that a lot of people incl. group leaders use to keep up-to-date with stuff esp. as it is relatively low volume (maybe 30 (?) messages a week covering a range of issues). The archives are at: https://listserv.nodak.edu/archives/co-cure.html . It is an announcement list so discussion generally isn't allowed. The messages from that often get forwarded to other E-mail lists and also get picked up on Facebook e.g. by XMRV Global Action. Each post has its own individual weblink - I sometimes make shortlinks for the messages and Tweet them, etc. One advantage is that one doesn't need to be on Facebook to access it (if there is a Facebook page, people who are not on Facebook can't access it).
eric_s
Senior Member
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- Switzerland/Spain (Valencia)
I think it's a good idea, actually i had similar thoughts (really ;-) ). In this contest here it might also be important to be able to split the vote and such a site might help with that. I guess this is a situation that will happen again (the necessity to split the vote).
I think we would have to think well about how to set it up. And i would not mix it with other things, i would let it be a group only for this kind of contests, nothing else.
I think the group should only serve as a platform to tell people about upcoming and active contests, but not tell people who to vote for. The members could discuss about that themselves, but everybody should be free to think and do what he likes. If it's not like that, there would probably always be problems and it could never reach everybody, people who don't agree would leave again. It would be good to have people from all the organisations there, so they can bring their members there.
I think we would have to think well about how to set it up. And i would not mix it with other things, i would let it be a group only for this kind of contests, nothing else.
I think the group should only serve as a platform to tell people about upcoming and active contests, but not tell people who to vote for. The members could discuss about that themselves, but everybody should be free to think and do what he likes. If it's not like that, there would probably always be problems and it could never reach everybody, people who don't agree would leave again. It would be good to have people from all the organisations there, so they can bring their members there.
helen41
Senior Member
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I have been discussing with another contester the merits of setting up a facebook page where charities of all types can post for votes. She supports a dog shelter, maybe we can invite Pepsi contestants, etc. I'm ok with moderating-I'll work on it today
Best of luck, although sounds like you could end up doing work for all sorts of charities, including ones we might be in opposition with?
Votes after 20 days
Pacific:
Whittemore Peterson Institute: 19594+ 994 = 20588
Be Perfect Foundation: 8045 + 212 = 8257
Conejo Valley Friendship Circle: 6621+ 203 = 6824
Surfers Healing 5331 +155 = 5486
Canada:
Light and Love Home- Vancouver 11618+521= 12139
Saint John Regional Hospital Foundation 5348 + 209 = 5557
4th: National ME/FM Action Network 2243 + 160 = 2403 (they have still not gone over 200)
Overall (groups ahead of the WPI):
Foundation for Angelman Syndrome Therapeutics (FAST): 46321 +2693 = 49014 Team Sanfilippo Foundation: 45617 + 2381= 47998
CHERUBS: 30362 + 1187= 31549
International Rett Syndrome Foundation 22657 + 1078= 23735
Journey 4 A Cure Inc 21473 + 999 = 22472
(There could be a tiny different with the attachment - the version saved at 479 hrs 57 mins isn't letting me make a pdf so I'm using the version from 479 hrs 53 mins)
Votes from midnight eastern time/10pm Mountain time last night - incl. increase over previous 24 hours.
Pacific:
Whittemore Peterson Institute: 19594+ 994 = 20588
Be Perfect Foundation: 8045 + 212 = 8257
Conejo Valley Friendship Circle: 6621+ 203 = 6824
Surfers Healing 5331 +155 = 5486
Canada:
Light and Love Home- Vancouver 11618+521= 12139
Saint John Regional Hospital Foundation 5348 + 209 = 5557
4th: National ME/FM Action Network 2243 + 160 = 2403 (they have still not gone over 200)
Overall (groups ahead of the WPI):
Foundation for Angelman Syndrome Therapeutics (FAST): 46321 +2693 = 49014 Team Sanfilippo Foundation: 45617 + 2381= 47998
CHERUBS: 30362 + 1187= 31549
International Rett Syndrome Foundation 22657 + 1078= 23735
Journey 4 A Cure Inc 21473 + 999 = 22472
(There could be a tiny different with the attachment - the version saved at 479 hrs 57 mins isn't letting me make a pdf so I'm using the version from 479 hrs 53 mins)