Round 3 for WPI and Chase; Healkick's New Features

From ME/CFS patient Justin Reilly:

There is a silver lining in winning less than $100K in that we are eligible for the $200K discretionary spending prize. (There is also an additional $300K in discretionary spending for which I believe all the charities in round 2 are eligible).

I sent the following letter in case anyone wants any ideas. Thanks to Ann from whom I borrowed some wonderful phrasing!

Dear Chase Community Giving,

I am a Chase customer. I support Whittemore Peterson Institute in the CCG contest. I am writing you to let you know how great WPI is and urge you to award them some of the discretionary contest funds.

I have had ME/CFIDS for ___ years. 17 million people worldwide have this devastating neuroimmune disease, with virtually no viable treatment options and little bona fide research.

That is, until the Whittemore Peterson Institute recently came along. One family, fighting for their daughter's life, footed the bill and opened a state of the art Institute to research neuroimmune disease. As the New York Times noted, comparing WPI to Michael J. Fox's Foundation and others, "Harvey and Annette Whittemore were not the first to start a research foundation out of desperation to find answers for an incurable disease... But few if any of the private groups have produced notable results as quickly as the Whittemore Peterson Institute has."

Unfortunately, the Whittemore family can no longer cover all of the Institute's costs alone. WPI needs help raising money that will all go toward desperately needed research for a cure. This is where you can help. Please award this most deserving of charities as much of your discretionary funding as possible!

Thank you for your consideration.

Sincerely,

http://apps.facebook.com/chasecommunitygiving/rules

(Charities awarded a Round 2 grant of $100,000 or more in the current program are not eligible to receive the $200,000 Advisory Board grant)

 ***

Healkick, the forum for ME/CFS patients under 40, has added new features:

• IM Chat (private and public). "Many patients have said it’s the first time they’ve actually talked to another patient," says Cari Lea, who co-founded Healkick with Joey Tuan. 

• Language friendly. You can choose the language of your choice to read posts. No more struggling to read the forum in English.

• Patient Map.  "Every member that joins the site enters where they live," explains Cari Lea.  "It all gets put on our Patient Map. So patients can see who lives near them, and find patients they can meet up with or at least find some local support--something that is very hard for most of us to find."

Facebook and the Government

A former high-ranking government worker has told CFS Central that in his experience what gets the government’s attention is, yes, Facebook. In his view, the government has learned to ignore phone calls, faxes and emails. But Facebook campaigns, he said, “panic” them because they’re viral, embarrassing, and leave an indelible footprint.  Ideally, a campaign could be started directly on the government's own Facebook pages.

MONEY AND JUSTICE

Ailing biologist Dr. Alfred Kinsey pleaded to A & P supermarket heir George Huntington Hartford II in the 1950s for a research grant to cover his groundbreaking research into human sexuality. “We need money,” Kinsey told Hartford in the film Kinsey.  “We need someone to give us money.  You have no idea what I’ve had to endure just to obtain the same rights other scientists take for granted.  My funding has been slashed, my name has been dragged through the mud in every newspaper and magazine across this country…. We’re broke.  I’m not sure how much time I have left.  Help me.  I have to get it all on the record.”

Hartford refused to give Kinsey the grant:  He found the subject matter too scandalous and controversial.

Sound familiar?

If enough ME/CFS patients vote in round two of the Chase Community Giving contest, they can help ensure that WPI gets the money it needs for ME/CFS research.  

1. Go to facebook: http://www.facebook.com
2. Copy and paste this URL: http://www.facebook.com/ChaseCommunityGiving?ref=ts
3. Click the "like" button (to the right of "Chase Community Giving" at the top. If you’ve  already "liked" Chase Community Giving, you won’t see the “like” button, and you can skip to the next step.
4. Copy and paste this URL: http://tinyurl.com/wpiround2  Click the big green "Vote & Share" button to cast your vote.

ZOMBIE APOCALYPSE NOW

  Sounds Like ME/CFS to Me

 

One of the CDC's polite press guys, David Daigle, whom I've had the pleasure of speaking with on several occasions, posted this how-to manual to prepare for the Zombie Apocalypse, on the CDC's Public Health Matters Blog.  Curiously, what causes folks to transmogrify into zombies appears to be, according to Daigle, an infectious agent passed in a bite or bodily fluids that causes a neurodegenerative syndrome.  Does David Daigle know something we don't know?  Not to mention that patients describe both being a zombie and ME/CFS as "a living death," "death warmed up" and "I feel like such a zombie!" 

Below, in purple, is an excerpt from Daigle's post, which drew a whopping 23,000 readers to the lonely CDC blog--a record--causing the site to crash. 

Preparedness 101: Zombie Apocalypse

There are all kinds of emergencies out there that we can prepare for. Take a zombie apocalypse for example. That’s right, I said z-o-m-b-i-e a-p-o-c-a-l-y-p-s-e. You may laugh now, but when it happens you’ll be happy you read this, and hey, maybe you’ll even learn a thing or two about how to prepare for a real emergency.

A Brief History of Zombies

We’ve all seen at least one movie about flesh-eating zombies taking over (my personal favorite is Resident Evil), but where do zombies come from and why do they love eating brains so much? The word zombie comes from Haitian and New Orleans voodoo origins. Although its meaning has changed slightly over the years, it refers to a human corpse mysteriously reanimated to serve the undead. Through ancient voodoo and folk-lore traditions, shows like the Walking Dead were born.

A couple dressed as zombies - Danny Zucco and Sandy Olsson from the movie Grease walking in the annual Toronto Zombie Walk.

In movies, shows, and literature, zombies are often depicted as being created by an infectious virus, which is passed on via bites and contact with bodily fluids. Harvard psychiatrist Steven Schoolman wrote a (fictional) medical paper on the zombies presented in Night of the Living Dead and refers to the condition as Ataxic Neurodegenerative Satiety Deficiency Syndrome caused by an infectious agent. The Zombie Survival Guide identifies the cause of zombies as a virus called solanum. Other zombie origins shown in films include radiation from a destroyed NASA Venus probe (as in Night of the Living Dead), as well as mutations of existing conditions such as prions, mad-cow disease, measles and rabies.

The rise of zombies in pop culture has given credence to the idea that a zombie apocalypse could happen. In such a scenario zombies would take over entire countries, roaming city streets eating anything living that got in their way. The proliferation of this idea has led many people to wonder “How do I prepare for a zombie apocalypse?”

Well, we’re here to answer that question for you, and hopefully share a few tips about preparing for real emergencies too!

Disaster or Blackout Emergency Supplies

Some of the supplies for your emergency kit

Better Safe than Sorry

So what do you need to do before zombies…or hurricanes or pandemics for example, actually happen? First of all, you should have an emergency kit in your house. This includes things like water, food, and other supplies to get you through the first couple of days before you can locate a zombie-free refugee camp (or in the event of a natural disaster, it will buy you some time until you are able to make your way to an evacuation shelter or utility lines are restored). Below are a few items you should include in your kit, for a full list visit the CDC Emergency page.

• Water (1 gallon per person per day)
• Food (stock up on non-perishable items that you eat regularly)
• Medications (this includes prescription and non-prescription meds)
• Tools and Supplies (utility knife, duct tape, battery powered radio, etc.)
• Sanitation and Hygiene (household bleach, soap, towels, etc.)
• Clothing and Bedding (a change of clothes for each family member and blankets)
• Important documents (copies of your driver’s license, passport, and birth certificate to name a few)
• First Aid supplies (although you’re a goner if a zombie bites you, you can use these supplies to treat basic cuts and lacerations that you might get during a tornado or hurricane)