Saturday, April 23, 2011

Make A Difference: Vote for the WPI

Thank you for all your kind and supportive comments in response to my last post. I continue to be offline even more than usual as I recover from recent setbacks and ongoing activity. However, for those who may be unaware, I wanted to tell you that Chase Community Giving is holding another charity contest, offering a share in $2,500,000 to the 100 charities that receive the most votes from its Facebook fans. The Whittemore Peterson Institute (WPI) for Neuro-Immune Diseases is one of the charities for which you can vote.

In my opinion, the WPI has done more for ME/CFS research and awareness in the last few years than any other organization or government institute has done in 25 years. I am hopeful that, with enough funds, they will someday soon be able to find definitive biophysical markers, viable treatments (currently none exist) and possibly even a cure in my lifetime.

It is important to note that the WPI is also seeking answers for autism, Lyme disease, atypical MS and other neuro-immune diseases.

To vote for them, all you need to do is the following:
(Note: Facebook account required)

1. Go to: http://www.facebook.com/ChaseCommunityGiving?ref=ts
2. Click "like" on top of the page
3. Go to: http://apps.facebook.com/chasecommunitygiving/
4. Type "Whittemore Peterson Institute" in the search box
5. Click on the WPI and then click VOTE!

And you are done! It takes less than one minute, and could make a huge difference for all those suffering from this disease.

You have 10 votes you can use, so you are free to vote for any other charities of your choice as well. There are also a few other ME/CFS organizations in the running if you'd like to vote for them (search for CFS, CFIDS, ME/CFS, chronic fatigue syndrome or myalgic encephalomyelitis to find them).

Before concluding, I want to take a moment to tell you of a friend of mine who also has severe ME/CFS. Late last year, she suffered a crash that left her eye muscles so weak she was forced to wear an eye mask 24/7, rendering her essentially blind. I have just learned that she recently experienced yet another setback that has severely altered her tolerance to sound. She now lives in total darkness and silence 24 hours of every single day. She writes notes with her eyes closed in order to communicate. In return, her boyfriend replies by spelling out words, letter by letter, in her hand.

Visual problems and sensitivity to light and sound in ME/CFS are not uncommon. I myself suffer from these same symptoms, though thankfully not to such a severe degree. I know many others who also experience these difficulties -- no longer able to be online, read or watch TV. Some are living in darkness, some in silence and some in both.

I have received many emails in the last couple of years from bedridden patients or family members of bedridden patients, telling me details of the utter devastation that this disease has afflicted upon their lives. Some have not left their bed in years; some struggle to eat, drink and even breathe.

I tell you this not to evoke sympathy, but to explain why it is so urgent that we receive funds for research. ME/CFS is a very serious, treacherous disease. It often strikes suddenly (typically following a viral infection), and can afflict men and woman of all ages -- including young children. As with any illness, the disease can range from mild to severe, with some patients experiencing a level of disability equal to that of late-stage AIDS. Yet, not many know the full spectrum of the illness because much of the suffering occurs behind closed doors.

Despite its seriousness and high prevalence (approximately 1 million Americans), ME/CFS remains one of the least funded of all diseases in the United States. More money is spent studying hay fever. We need proper funding to find the answers, discover treatments and a cure, and thus finally end the suffering of millions world-wide.

Thank you so much for your time in reading this, and in voting for the WPI. Please note voting ends on May 4th.

5/5/11 Update: The WPI came in 5th place and won the $25,000! Thank you to all who voted. Please stay tuned for the 2nd round of voting, and a chance for the WPI to win $500,000!

5/27/11 Update: Round two has now ended and the WPI came in 12th place! They won 40k in addition to the 25k in the first round -- with a final total of 65k. Thanks to all who voted!
 

9 comments:

  1. You put this so well - I hope everyone reading will go to FB and vote for WPI immediately! And then get your friends and family to vote too...we cannot afford to be passive about this. Thank you for using precious energy to write about it.

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  2. Thanks for the reminder...I voted! Right now WPI is number 4.

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  3. Laurel, although I know it's not because you are better, but because you feel this is extremely important, it's so good to see you blogging again!

    I hope everybody who reads this and has a FB account will vote for the WPI and ask their friends to do the same.

    I was so sad and shocked to read about Alexis' setback, and it makes me implode with helplessness and angry at the people who work hard to trivialize this brutal disease. All we ask for is equal treatment like patients with any other disease that has similarly severe implications.

    Much love to you, Laurel, as always.

    Nina

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  4. Thank you, Laurel. Voted!

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  5. Hi Laurel,
    What happen to your yesterday post?(May 12th) I know Blogspot was having challenges yesterday and I was hoping to link it to my blog. It was very good. Do you still have it somehow? I was happy to see you did a post. :o) I think of you now and then and hold you in healing thoughts. Take care, Lori

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  6. Thanks, Lori. I have no idea what happened to it! Blogger has been down over 24 hours. I hope once they fix it, it'll be back up again. If not, I'll try reposting it in a few days. Not up to it at the moment, regretfully! Thanks for your kind words!

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  7. Actually, just reposted it. Many of the comments were lost though, unfortunately!

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  8. 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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  9. Thanks, Anonymous. I voted for all the organizations a few days ago. I haven't posted about the latest contest here as all these voting campaigns really wipe me out, and I've needed to take a step back from advocacy for awhile to focus on my health. So thanks for doing the work for me and posting this! :)

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