Thursday, May 19, 2011

Stop procrastinating and VOTE!


THIS IS A RE-POST FROM MY FRIEND BARRY'S BLOG. His site is here. I am re-posting his blog post because he said exactly what i was thinking ... so, here it is:

Something is bothering me and I want to share it.

As those with chronic illnesses who read this will no doubt be aware, the Whittemore Petersen Institute (WPI) is shortlisted for a Chase Community Giving charity award. That award will be based on how many votes the WPI secures via Facebook and the amount can be up to HALF A MILLION DOLLARS.

Let's go back a step though. In becoming part of the online community of people with ME or CFS or whatever we define it as, I see active communities running into the thousands in terms of numbers of members. One desire seems to unite us - a desire for robust biomedical research to determine why we are sick and how we can be effectively treated/cured.

I'm sure you know where I'm headed with this post. Along comes a financial institution who is prepared to give up to HALF A MILLION DOLLARS to fund this research. And all we have to do is click a few buttons on Facebook and vote.

So here's what bothers me. The first round saw the WPI collect a decent enough number of votes but a tiny amount when you consider how many people are active on Facebook and have a vested interest in ME/CFS and in helping find a cure. The second round started today and we are struggling to stay in the Top 10. We are being beaten by a marching band!

It's all well and good us trying to gain votes from our friends etc but, really, votes purely from that online community I keep mentioning should see us storm this contest and bank HALF A MILLION DOLLARS.

I know I'm preaching and I know we are all sick but really there can be no second chance for something like this. We will regret it for years if we do not squeeze every cent out of this charity award. HALF A MILLION DOLLARS (last time, promise).

Anyone who reads this, the message is simple. Vote. Please. This isn't X Factor or American Idol and this isn't some lame popularity contest. This is the potential for people to get their lives back.

Full instructions below. Oh, and please don't let the 'unsecure connection' warning put you off. Nobody is going to steal your identity during the 2 minutes you use a Facebook app to vote.

Thank you.

STEP-BY-STEP Instructions:

1. From your Facebook page, go to Chase Community Giving:
http://www.facebook.com/ChaseCommunityGiving.

2. "Like" Chase Community Giving by clicking on the "Like" button.

3. Now search for Whittemore Peterson Institute for Neuro-Immune Disease.

4. Cast your vote for WPI by clicking the "Vote Now!" button.

CHASE COMMUNITY GIVING: BIG IDEA

The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and autism, have too few medical solutions. WPI continues to make significant strides through the work of their innovative research program. Translating novel research into effective patient treatments for millions around the world will begin with the opening of their 10,000 sq. ft. medical facility. Here they will engage in revealing clinical trials and provide onsite care to those who are unable to afford care. The WPI require funding for initial expenses and to establish a patient fund. WPI’s commitment to discovery has already inspired much hope worldwide. Now it is time to put hope into action by offering meaningful patient care to these underserved populations

8 comments:

  1. I voted, too. But I agree-- we've GOT to get more people on this! The marching band thing really got to me too! We're talking about our lives here ... as opposed to a marching band ... Sigh... keep up the good work Lee Lee!

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  2. While one is at it, one can vote for the CFIDS Association of America where all the money is going to research - so potentially $900,000 could be raised.

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  3. This comment is in relation to a previous post (I apologise). Doing a stoneage diet will help with your allergy, intolerance and digestive tract issues and will also deal with the yeast issue (along with diflucan and a good probiotic). Moreover, it will balance your blood sugar levels.
    I live in the UK and have been ill for 4 years now - I am 37. Check out this website - www.drmyhill.co.uk - There is lots of information on there that may be of interest to you. Hope it helps in some way!! Keep going - I know it's hard but my thoughts are with you x

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  4. It bothers me, too, Lee.

    Here is another example: it frustrates the hell out of most CFS people when they see researchers, the media, Governments and doctors refer to CFS/ME as a 'biopsychosocial' condition, and all the scant research budget available going to the psychiatrists for yet more totally useless and irrelevant research.

    Yet, if you look at this petition: http://bit.ly/Research4ME which calls for NO MORE psychiatric research, many more people 'Like' the petition than have signed it.

    WHY? Don't we want to change things? What exactly is holding our community back from campaigning and voting and signing to get things changed?

    I don't understand, but I am very disappointed.

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  5. From the Whittemore Peterson Institute Facebook page:

    A message from Annette Whittemore .

    "As the competition moves along more charities are combining efforts. In the spirit of working together for patients, we're asking for people to use any unused votes to help support the CAA. Many have already voted for both and we thank you. Let's make medical research and patients a priority on this top 10 list for Chase."

    ---

    Links for the two organisations are:

    (i) the CFIDS Association of America: http://t.co/VZEd5Pk

    (ii) the Whittemore Peterson Institute http://t.co/Ev8j2dP

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  6. I emailed all my friends in a group and asked them to vote for WPI, and although they love me, only like 3 voted. So here's my idea and suggestion: I'm going to email each of my friends individually, and not care how annoying I am, and ask them again to vote. I could probably get 30 or 40 votes that way, depending on how many of my friends are flakes. I'm talking about my good friends, not just random Facebook acquaintances, but now that I think about it, maybe I'll include acquaintances, too. My friends will forgive me, and who cares what my acquaintances think?

    Anyway, like the nature of voting itself, one person doing it alone doesn't make much of a dent, but if a lot of us do it, even if just a few of us harass everyone we electronically know, we could get hundreds of votes. Let's do it, and encourage all our sick Internet-addicted friends to do it, and even our healthy friends. Lets get organized, people!

    Love,

    Lee

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  7. There's currently a vote ending in less than 2 days time (11:59am EST Nov 22).

    Some details below from latest leaderboard (2 days 6 hours before end)
    ----------

    As nobody was doing this (that I know of), for recent leaderboards I have been following the votes being got by the leading 9 ME/CFS groups along with how much 100th position has gone up by (101st would be slightly more interesting but one can't see that).

    For the last 7 12-hour periods, 100th position has gone up by
    (chronologically): +39, +44, +53, +40, +61, +75, +50. At the last leaderboard 100th was at 882 votes. That's with 2 days, 6 hours to go.

    Looking at the last two jumps (i.e. +75 and +50) (it would be extra work for me to calculate too many periods) apart from the IACFS/ME, the groups have been losing ground.

    It is going to be touch-and-go for lots of groups whether they get the $25,000 or not.

    #30 INTERNATIONAL ASSOCIATION FOR CHRONIC FATIGUE SYNDROME/ME Chicago, IL http://bit.ly/s48mcK (+74) 1,228 (+53) 1,281

    #34 CFSKNOWLEDGECENTER INC Wellington, FL http://bit.ly/lkvWpU (+50)
    1,194 (+37) 1,231

    #56 MASSACHUSETTS CFIDS/ME & FM ASSOCIATION Quincy, MA
    http://bit.ly/sJXeQ9 (+52) 1,016 (+50) 1,066

    #72 ROCKY MOUNTAIN CFS/ME AND FM ASSOCIATION Denver, CO http://bit.ly/s5fAJh (+38) 931 (+36) 967

    #76 WI MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME, ASSN, INC.
    Sun Prairie, WI http://bit.ly/mlmr0c (+42) 906 (+39) 945

    #90 ENTEROVIRUS FOUNDATION INC San Francisco, CA http://bit.ly/lzhRfi
    (+47) 862 (+36) 896

    #93 NJCFSA Florham Park, NJ http://bit.ly/tXpa46 (+54) 850 (+43) 893

    #158 CFOG, INC Kennesaw, GA http://bit.ly/kdavB3 (+47) 481 (+31) 512

    #180 CONNECTICUT-CHRONIC FATIGUE AND IMMUNE DYSFNCTN SYNDROME ASSOC INC Milford, CT http://bit.ly/uqIqF7 (+20) 368 (+23) 391

    In previous CCG contests, there has been a charge towards the end of the contest from other groups. As is clear, the ME/CFS are generally just hanging in there - not keeping up with how much 100th is jumping up by but perhaps able to hold on if things go right. 4 groups are within 85 votes of 100th position.

    A few votes could make all the difference ...

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