Wednesday, May 25, 2011

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.

Thursday, May 19, 2011

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.

Wednesday, May 18, 2011

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.

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!

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)

Sunday, May 15, 2011

SHOAH TESTIMONY

A Few of the Speakers at this Week's Chronic Fatigue Syndrome Advisory Committee Meeting at the Department of Health and Human Services in Washington, D.C.


Dr. Mary Schweitzer delineates what's problematic about the CDC when it comes to ME/CFS:



Dr. Joan Grobstein, a neonatologist, discusses transmission and treatment of ME/CFS and what the government needs to do in the next six months to end the inertia:




Lori Chapo-Kroger, the founder of CFS Solutions of West Michigan, talks about the death of three friends from ME/CFS:



Attorney Charlotte von Salis speaks on disability benefits, the problematic definition, and why many patients want to dissociate from the CFIDS Association:



Respiratory therapist Meghan Shannon, who's had ME/CFS for 35 years, gives her moving testimony and explains what's wrong with the CDC website:



Demonstration by playwright Rivka Solomon, who is joined by other patients, outside HHS:



Too ill to testify in person, 22-year-old patient Ben Di Pasquale was filmed by a local TV station.