$$$ for WPI vote daily now in Vivint Round 2!

[Sasha]

This link: http://www.mecfsforums.com/wiki/Organizations_for_ME/CFS is a list of various M.E. organisations throughout the world. Not too sure how up to date it is nor how complete but I'm fairly positive many would still be current.

Perhaps people could contact some of these organisations with a well crafted, persuasive email outlining all the facts, to encourage some votes. The young people ones like AYME in the UK would be good as young people spend a lot of time on facebook lol!

Have just done about 80 off that list with English-language sites and available emails (quite a few small, local US ones) - no clue how many people that will eventually reach but worth a go! Tomorrow I'll start on the non-English ones. Thanks again for the link, Francelle!

What's surprising (shocking, really) is how few countries are on that list with ME/CFS groups. I don't know whether it's how the list was compiled but there's only one country in Africa (South Africa), nowhere in Eastern Europe, zippo in the Middle or Far East, zilch in South America...

Anyway, off for my cup of cocoa and a cheap thriller (they balance each other out). :sofa:

 

[Sasha]

Just did today's vote - WPI are holding their strong lead in the Pacific region and are on course for the $100,000 (yippee for Wippee!).

Weirdly, they're shown as being in 5th place even though they actually have more votes than the people in 4th place. Some glitch on the leaderboard there...

I'm going to email more organisations this evening to spread the word so hopefully we'll get a boost. Keep voting, folks!:victory:

 

[Francelle]

Have just done about 80 off that list with English-language sites and available emails (quite a few small, local US ones) - no clue how many people that will eventually reach but worth a go! Tomorrow I'll start on the non-English ones. Thanks again for the link, Francelle!

....Anyway, off for my cup of cocoa and a cheap thriller (they balance each other out). :sofa:

You're awesome Sasha! Where do you get the energy? My energy is quite good at the moment so I might just do a few more as well and if we double up it doesn't matter, it will just reinforce the message!

Thanks for the feedback on the signature. I know how to do it now - lol!

 

[Sasha]

You're awesome Sasha! Where do you get the energy? My energy is quite good at the moment so I might just do a few more as well and if we double up it doesn't matter, it will just reinforce the message!

Thanks for the feedback on the signature. I know how to do it now - lol!

Hi Francelle - actually it wasn't too bad, I just used the same text over and over and did multi-address emails using bcc so I think it took only about an hour and a half (most of which I spent writing the text!). Another time-consuming bit was trying to track down contact emails when only websites were given but each one usually took only a minute.

I was thinking that the next thing I could try after the ME/CFS list would be other groups that the WPI's research & treatment will help such as autism and Gulf War Syndrome. Autism in particular is a huge health issue with highly motivated parents trying to get the best for their children - I'm wondering if there is a big list of groups somewhere.

I also didn't look at websites for US groups at state or local level to find contact emails - I just emailed groups that listed them on that Wiki page, so if you'd rather stick to ME/CFS groups, there are some there that might have contact emails on their websites that I didn't seek out. Some of the groups might be quite small but if we get only one new voter a pop, it could be worth it! It will all add up.

If you fancy tackling any of that to expand our coverage, please feel free to use or adapt my email (which only refers to ME/CFS so would need editing for other health groups):

Hi,

I am one of over 1,000 people with ME/CFS who is voting daily online in the worldwide Vivint contest to try to win over $100,000 for research into our disease for the Whittemore Peterson Institute. I hope that you will put the text below onto your website or send it to your mailing list of supporters. Research helps all of us and this is very large amounts of free money!

Warm regards,
Sasha


WPI is winning $100,000 for ME/CFS research help them win more!

In October 2009, the Whittemore Peterson Institute published a paper on the possible link between the XMRV retrovirus and ME/CFS. Their finding sparked unprecedented interest in the disease in scientists across the world. The WPI not only continue their research but will open a clinic on 1 August 2011, using the latest research to inform treatment for patients with ME/CFS, with the hope of exporting successful treatment protocols to doctors everywhere. Patients in every country stand to benefit.

Since June 14th, over 1,000 people a day worldwide have been voting online for the WPI in the Vivint charitable giving contest. The WPI is strongly leading in its region and if that continues, it will win the Pacific region prize of $100,000 for research. Patients are reaching out to ME/CFS groups all over the world to ask them to join in to help the WPI win the all-regions prize of $250,000. The WPI is currently in fourth place for that prize so it is well within reach.

The charity that gets the most votes via Facebook (it takes only minutes to open an account!) wins. Everyone, anywhere in the world, can vote, even though the charities in the contest are all North American. Voting is daily and ends on August 27th.

Here is WPIs voting link: http://www.vivint.com/givesbackproject/charity/769

You can sign up on Facebook for a daily reminder to vote, here. http://www.facebook.com/event.php?eid=121179681298558
You could also set up your Microsoft Office calendar to remind you to vote every day.

WPI is already winning please help them win more!

​

 

[Dolphin]

(alluded to above)
V. Good news: after the Conejo Valley Friendship Circle previously going up in pacific fairly rapidly, and then slowly down a bit on Saturday, its vote has now collapsed for two days in a row:
Whittemore Peterson Institute: 6146 + 1082 = 7228
Conejo Valley Friendship Circle: 3615 + 59 = 3674

Be Perfect Foundation is now back up to 2nd place in Pacific:
3433 + 482 = 3915

Good that the WPI got 1000 votes in a day again. If we can keep putting on the votes, even if groups make a charge, it'll be hard to make up the gap if we've built up a substantial lead in pacific.

These are the figures for the top three (WPI is still in 4th) overall:
Foundation for Angelman Syndrome Therapeutics (FAST): 10199 + 2261=12460
Team Sanfilippo Foundation: 10084+2275=12359
CHERUBS: 9439+1889=11328

We can always hope that the top 3 start slipping back.

News remains good in Pacific:
Whittemore Peterson Institute: 7228 + 1091 = 8319
Be Perfect Foundation: 3915 + 446 = 4361
Conejo Valley Friendship Circle: 3674 + 192 = 3866

Is the WPI's 1091 the most in one day? It must be close to it anyway.

The WPI looks like it will probably be passed out for 4th place overall in the next 24-48 hours:

International Rett Syndrome Foundation: 7052+1240=8296

 

[Nielk]

I also voted today like every day.
Even before taking my pain meds!:headache::In bed:

So, please friends - don't forget to vote.:innocent1:
It's such a simple easy thing you can do and who knows how it might benefit you personally in the future.:victory:

I wish everyone a better day today!
Nielk

 

[Sasha]

Bumping! Just voted today and WPI are still strongly leading in the Pacific. :victory:

They're in 5th place overall by about 150 votes - still early days, though! Let's hope our efforts to get more WPI supporters pay off. I wasn't well yesterday so didn't contact the European charities but will try to do that today. I had one very nice acknowledgement yesterday from one of the US charities that I contacted saying they'd put the info on their site so I hope more will - I think lots of groups either aren't aware of the contest or don't realise how winnable it is for the WPI so haven't yet put efforts into getting their members involved.

 

[Dolphin]

News remains good in Pacific:
Whittemore Peterson Institute: 7228 + 1091 = 8319
Be Perfect Foundation: 3915 + 446 = 4361
Conejo Valley Friendship Circle: 3674 + 192 = 3866

Is the WPI's 1091 the most in one day? It must be close to it anyway.

The WPI looks like it will probably be passed out for 4th place overall in the next 24-48 hours:

International Rett Syndrome Foundation: 7052+1240=8296

(I was 11 mins late with recording the votes)

News remains good in Pacific:
Whittemore Peterson Institute: 8319 + 1099 = 9418 (best vote ever?)
Be Perfect Foundation: 4361 + 451 = 4812
Conejo Valley Friendship Circle: 3866 + 410 = 4276 (that's a big increase on what they were getting a few days ago - will they go up over 1,000 again?)

As expected yesterday, the WPI were knocked back into 5th position:

International Rett Syndrome Foundation: 8296 + 1379 = 9675

 

[eric_s]

Has anyone contacted Verein CFS Schweiz (Switzerland)? I tried to phone with them today, for some other reasons, but i would have mentioned this contest. I will try again later today and then the next days, until somebody picks up the phone. I will ask them to advertise for the contest.

I can also ask some people in Spain to mention it on forums or in organisations, in case they don't already do it.

 

[Sasha]

Has anyone contacted Verein CFS Schweiz (Switzerland)? I tried to phone with them today, for some other reasons, but i would have mentioned this contest. I will try again later today and then the next days, until somebody picks up the phone. I will ask them to advertise for the contest.

I can also ask some people in Spain to mention it on forums or in organisations, in case they don't already do it.

Hi Eric - I'm going to contact the non-English language European ME/CFS organisation on the Wiki list, including Verein CFS Schweiz but it would be great if you could mention the contest to them - the more people they hear it from (especially a Swiss national!) the better. I was going to use Google Translate which doesn't offer Swiss German - I'm hoping German German will be OK.

That would be great if you could get a mention for the contest on Spanish forums too. It can be hard for charities with websites to update their sites with news but if a message goes out on a forum, it's immediate and is reaching people who might be more interested in activism and fundraising.

 

[eric_s]

Yes, i will tell them about it when i reach them. The German Google translator uses is fine, it's what we would use in a letter as well, but i guess the translation will be a bit wierd, because German is probably a bit tricky. If you like you can post your translation here or send it to me in a pm and i will fix the errors. Then you can use that for any German speaking groups.

I will also mention it to Spanish people.

 

[Sasha]

Thanks, Eric! That will be very useful. Here's the translation:

Hallo,

Ich bin einer von ber 1.000 Menschen mit ME / CFS, die Abstimmung wird tglich online in der weltweiten Vivint Contest zu versuchen, ber 100.000 Dollar fr die Erforschung unserer Krankheit fr die Whittemore Peterson Institute zu gewinnen. Ich hoffe, dass Sie den Text unten setzen auf Ihrer Website oder senden Sie sie an Ihre Mailing-Liste der Untersttzer. Forschung hilft uns allen, und das ist sehr groe Mengen an Geld!

Herzliche Gre,
Sasha


WPI gewinnt $ 100.000 fr ME / CFS-Forschung - ihnen helfen, mehr zu gewinnen!

Im Oktober 2009 verffentlichte die Whittemore Peterson Institute ein Papier ber die mgliche Verbindung zwischen den XMRV Retrovirus und ME / CFS. Ihre Suche nach lste nie dagewesenes Interesse an der Krankheit in die Wissenschaftler auf der ganzen Welt. Das WPI nicht nur weiterhin ihre Forschung, sondern eine Klinik auf 1 August 2011 zu ffnen, mit der neuesten Forschung zur Behandlung von Patienten mit ME / CFS zu informieren, mit der Hoffnung, des Exports erfolgreiche Behandlung Protokolle zu rzten berall. Patienten in jedem Land davon profitieren.

Seit dem 14. Juni mehr als 1.000 Menschen pro Tag wurden weltweit Abstimmung online fr die WPI in der Vivint Spenden fr wohlttige Zwecke zu bestreiten. Die WPI ist stark fhrenden in der Region, und wenn das so weitergeht, wird es der Pazifik-Region Preisgeld von 100.000 $ fr die Forschung zu gewinnen. Die Patienten sind Annherung an ME / CFS-Gruppen auf der ganzen Welt um sie zu bitten, mitzumachen, um die WPI gewinnen die All-Regionen Preisgeld von $ 250.000. Die WPI ist derzeit auf dem vierten Platz fr diesen Preis so ist es gut erreichbar ist.

Die Nchstenliebe, die die meisten Stimmen via Facebook (es dauert nur wenige Minuten, um ein Konto zu erffnen!) Bekommt, gewinnt. Jeder, berall in der Welt, kann stimmen, obwohl die Wohlttigkeitsorganisationen in den Wettbewerb aller nordamerikanischen werden. Voting wird tglich und endet am 27. August.

Hier ist WPI stimmberechtigten Link: http://www.vivint.com/givesbackproject/charity/769

Sie knnen sich auf Facebook fr eine tgliche Erinnerung zu whlen, hier. http://www.facebook.com/event.php?eid=121179681298558
Sie knnten auch Ihre Microsoft Office Kalender, um sich daran zu erinnern, vote jeden Tag.

WPI ist schon gewonnen - bitte helfen Sie ihnen mehr zu gewinnen!

 

[Sasha]

Hi again, Eric! I've come across this German CFS news site http://www.cfs-aktuell.de/index.htm but can't see anywhere a contact button - I don't read German though so I could easily miss it. Can you see any means of contacting them? Thanks!

 

[Sasha]

Anybody here speak Spanish?!

Anybody here speak Spanish?! The only active Spanish CFS website on that Wiki list is a forum like this one but I don't have a clue what to do on there! It's here:

http://www.sfc-em-investigacion.com/index.php

I searched on "Vivint" and it's not mentioned so they're unaware of it - would anyone like to try to get on that forum and post a message about Vivint? Feel free to use the auto-Google Translate Spanish version of my text (probably in comedy Spanish!):

**************************************************************

Hola,

Yo soy uno de los ms de 1.000 personas con sndrome de fatiga crnica, que es el voto diario en lnea en el concurso Vivint en todo el mundo para tratar de ganar ms de $ 100.000 para la investigacin de nuestra enfermedad para el Instituto Whittemore Peterson. Espero que se ponga el siguiente texto en su sitio web o enviar correo a la lista de seguidores. La investigacin nos ayuda a todos y el concurso ofrece grandes cantidades de dinero gratis!

Por favor, perdona mi traduccin automtica de Ingls a travs de Google Translate!

Un cordial saludo,
Sasha


WPI es ganar 100.000 dlares para la investigacin del sndrome de fatiga crnica - ayudar a ganar ms!

En octubre de 2009, el Whittemore Peterson Institute public un documento sobre la posible relacin entre el retrovirus XMRV y el sndrome de fatiga crnica. Su hallazgo despert el inters sin precedentes en la enfermedad de los cientficos de todo el mundo. El WPI no slo continuar con su investigacin, pero se abrir una clnica el 1 de agosto de 2011, utilizando las ltimas investigaciones para fundamentar el tratamiento de pacientes con sndrome de fatiga crnica, con la esperanza de exportar con xito los protocolos de tratamiento para los mdicos en todas partes. Los pacientes en todos los pases se benefician.

Desde el 14 de junio, ms de 1.000 personas al da en el mundo han estado votando en lnea para el WPI en el concurso Vivint donaciones caritativas. El WPI est fuertemente lder en su regin y si eso contina, va a ganar la regin del Pacfico premio de 100.000 dlares para la investigacin. Los pacientes que estn llegando a los grupos de sndrome de fatiga crnica en todo el mundo para pedirles que se unan para ayudar al ganar el WPI todas las regiones del premio de 250.000 dlares. El WPI se encuentra en el cuarto lugar con ese premio por lo que es su alcance.

La caridad que obtiene el mayor nmero de votos a travs de Facebook (que slo toma unos minutos para abrir una cuenta!) Ha sufrido. Todo el mundo, en cualquier parte del mundo, puede votar, a pesar de que las organizaciones de caridad en el concurso son de Amrica del Norte. El voto es diario y termina el 27 de agosto.

Aqu es el enlace del WPI voto: http://www.vivint.com/givesbackproject/charity/769

Usted puede inscribirse en Facebook para un recordatorio diario para votar, aqu. http://www.facebook.com/event.php?eid=121179681298558
Tambin puede configurar el calendario de Microsoft Office para recordarle a votar todos los das.

WPI ya est ganando - por favor ayude a ganar ms!

 

[eric_s]

No problem, the German translation is quite funny actually ;-) I guessed it would be this way because i think it's very hard to translate something to German for a program.

I know someone who knows the people behind CFS Aktuell well, so i can ask her. CFS Aktuell is a member of "Buendnis ME/CFS" and Buendnis ME/CFS is aware of the competition, but i don't know how far they promote it through the websites of their members. I will ask them about it.

Funny thing is i happen to know the owner of the Spanish forum as well (i met him a week ago). I will forward it to him.

 

[Sasha]

Bumping! just voted today and the Pacific Region is eating WPI's dust all the way, brilliant! If we keep this up, $100,000 is in the bag!

5th place overall but we're still seeking more supporters so hope we'll accelerate. The two leaders are neck and neck, though, so their supporters will be highly motivated. Stiff competition!

 

[Sasha]

No problem, the German translation is quite funny actually ;-) I guessed it would be this way because i think it's very hard to translate something to German for a program.

I know someone who knows the people behind CFS Aktuell well, so i can ask her. CFS Aktuell is a member of "Buendnis ME/CFS" and Buendnis ME/CFS is aware of the competition, but i don't know how far they promote it through the websites of their members. I will ask them about it.

Funny thing is i happen to know the owner of the Spanish forum as well (i met him a week ago). I will forward it to him.

Thanks, Eric - I loved using Google Translate, because at the touch of a button I appeared to be a multi-lingual genius but I expect it is routinely producing comedy versions of my text!

That's great that you know all those people - and the Spanish forum owner! Thanks for all your help with this.

 

[eric_s]

No problem, i'll try to do it as quickly as possible. The timing is not really perfect, because now i have to leave this room here in Alicante and then go to another city and two days later return to Switzerland. And yesterday they had a big party here, i only wanted to go out and see a friend quietly, but i met some people at the door and they invited me and so i spent one or two hours at the beach and now i'm pretty much smashed. So much for exercise is good for you . I guess i can do it in the next 2 days, it's a bit unlucky...

 

[Sasha]

No problem, i'll try to do it as quickly as possible. The timing is not really perfect, because now i have to leave this room here in Alicante and then go to another city and two days later return to Switzerland. And yesterday they had a big party here, i only wanted to go out and see a friend quietly, but i met some people at the door and they invited me and so i spent one or two hours at the beach and now i'm pretty much smashed. So much for exercise is good for you . I guess i can do it in the next 2 days, it's a bit unlucky...

Don't tire yourself out, Eric! Seriously, just rest up and do it when you're ready. In the meantime, if the German translation is comic but comprehensible I'd be happy to send that (I'm sure I've made a fool of myself in French, Dutch, Spanish, Italian, Norwegian, Danish & Swedish already - one more won't make any difference!).

 

[Dolphin]

Votes after 10 days

(I was 11 mins late with recording the votes)

News remains good in Pacific:
Whittemore Peterson Institute: 8319 + 1099 = 9418 (best vote ever?)
Be Perfect Foundation: 4361 + 451 = 4812
Conejo Valley Friendship Circle: 3866 + 410 = 4276 (that's a big increase on what they were getting a few days ago - will they go up over 1,000 again?)

As expected yesterday, the WPI were knocked back into 5th position:

International Rett Syndrome Foundation: 8296 + 1379 = 9675

9 hours ago, I recorded the votes 10 days in.

One thing about that is that it's easier to do mental calculations to see what the average vote has been - just knock off the last digit*. Although perhaps the daily increase is more interesting:

(Groups ahead of the WPI nationally)
Foundation for Angelman Syndrome Therapeutics (FAST): 17701 + 2625 =20326
Team Sanfilippo Foundation: 17416 + 2611 =20125
CHERUBS: 15050 + 1744 =16794
International Rett Syndrome Foundation: 9675 + 1393 = 11068

News remains good in Pacific:
Whittemore Peterson Institute: 9418 + 1117 = 10535 (best vote ever?)
Be Perfect Foundation: 4812 + 451 = 5263 (they got 451 the day before as well!)
Conejo Valley Friendship Circle: 4276 + 414 = 4690 (they got 410 the day before so are also pretty consistent)

*if you want to be exact, the usual rule for rounding is to add 1 if it is 5 or more - although if it's a 5, in this case, it should really just be add .5 as it's not any closer to the number above than the number below)