Monthly Archives: May 2014

“A Flash Mob for Amy!”

I love flash mobs. They bring surprise, joy and happiness to the recipients, but also bring a sense of giving to the participants. Here is one of the best I’ve seen in quite a while. It was a celebration of life in honor of this terminally ill woman.

Kindness Blog

In October of 2012, a mother named Amy was diagnosed with stage 3C metastatic ovarian cancer. The diagnosis was a terrible one, but after surgery, 4 months of chemo and lots of struggling, it looked like things were beginning to look up.

Her cancer was in remission for only a year before she and her family received awful news. It was back, only this time it was resistant to traditional treatment. That means her cancer will ultimately be terminal.

No one knows how much time they will have left with their darling mother, wife, sister, daughter and friend… but they’re going to make the most of it.

To celebrate their love for Amy…

"A Flash Mob for Amy!"

More than a few people decided to put together an amazing surprise.

amy-flash-mob2

To see the amazing surprise they had in store for Amy, watch the video below!

Life can be cruel and unfair, but at least the…

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For Animal Lovers

Every once in a while, I receive an email with (I believe) great photos or videos.  My “people” know I am an animal lover, and there are some email content that really “grab” me.  I hope it does the same for you:

How a dog steals food.
 

How a cat steals food.
When a cat annoys a dog.

When a dog annoys a cat.

A dog’s reaction to getting wet.

A cat’s reaction to getting wet.

A dog’s relationship with birds.

A cat’s relationship with birds.

Dog’s reaction to a walk.

Cat’s reaction to a walk.

Cat at 6 a.m. on Sunday

Dog at 6 a.m. on Sunday
Until one has loved an animal,
a part of one’s soul remains unawakened.

 

Comic Relief

I send emails back and forth with many friends, and I received one with this message:

If my body was a car, I would be trading it in for a newer model.  I’ve got bumps, dents, scratches & my headlights are out of focus. My gear box is seizing up & it takes me hours to reach maximum speed. Overheat for no reason and every time I sneeze, cough or laugh either my radiator leaks or my exhaust backfires!

I forwarded the message to several friends, and the following response was the best of the lot:

“My toaster just set off the fire alarm.  Entered my code three times trying to turn it off.  Only after placing the toaster outside did the system accept the code and turn off the alarm.  The alarm was surprisingly loud with the front door & garage open as an un-neighborly neighbor passing by showed no concern of me or the property’s well being.

So I appreciate the comic relief.  Perfect timing and utterly fantastic.  I will pass it on.”

Let the Sun Shine Through!

Happiness comes through doors you didn't even know you left open.

side Birthdays are good Living on Earth

Notes on the ME Awareness Day, Special Episode, May 12th

blue ribbon for me

A little note about the date chosen:  May 12th was Florence Nightingale’s birthday.  Nightingale is thought to have suffered from ME for years, because she did most of her teaching from her home and much of it when she was bed bound.  This information was offered by Jennifer Brea, who was the moderator of the special episode through Thrive Show out of Princeton NJ, which can be seen on YouTube at this link.

The panel participants for the discussion were:

Jennifer Brea (Host and a patient suffering with severe ME) is the director of Canary in a Coal Mine, a documentary film about life with Myalgic Encephalomyelitis.  She also cannot travel much and when she does, needs a wheelchair.  She is mostly bed bound.

Leonard Jason is a professor of psychology at DePaul University and Director of the Center for Community Research. He has served on the editorial boards of ten psychological journals, and has served on review committees of the National Institutes of Health. He currently has NIH grants to study the epidemiology of ME/CFS among youth, and has a longitudinal study involving tracking college students before and after getting mono.

Ryan Prior is a journalist, film producer, and social entrepreneur from Atlanta, GA.  A former writer for The Daily Beast and USA Today, he is now executive producer and writer of the feature film Forgotten Plague (previous working title: The Blue Ribbon). The documentary focuses on the role that major new trends in Big Data and genomic medicine play in addressing ME/CFS and transforming the future of medicine. In conjunction with the film, he is co-founder of the Blue Ribbon Foundation which will promote the documentary and install first-year medical students at top neuro-immune institutes.

Jeanette Burmeister is an attorney, ME activist, writer, mother, and wife. You can follow her health journey on her WordPress blog, Thoughts About ME.  She is also an ME patient.

Beth Mazur is a fellow ME patient and the lead architect overseeing all technical planning for HealClick, a website focused on helping neuroimmune patients learn about treatment reviews from patients that best match them. Previously, she was a consultant and technical product manager for startup companies including Merced Systems and Jaspersoft. She also built open-source software for microfinance institutions with Grameen Foundation.

 

Llewellyn King is a journalist whose long career began in Southern Rhodesia (now Zimbabwe), where he was born and raised.  He was a correspondent for Time, UPI, London newspapers.  Before starting his own publishing group, he worked for many media outlets.  As Editor-in-Chief of The Energy Daily, King Publishing Group’s flagship newsletter, he became renowned for his incisive reporting and commentary on the energy industry, and for his public speaking panache.  Also, he is the founder, executive producer and host of “White House Chronicle” on PBS.  He was a regular contributor on Voice of America, CNN, C-Span, NBC, “The Today Show,” “Meet the Press” and others.  Llewellyn’s interest in ME is due to a friend who is a sufferer.

Following are only some of the many comments made and questions asked of the panel (there were many more, but I think the sample below gives an idea of the thoughts on observers’ minds):

“I’ve heard several journalists say they’d love to cover ME, but they need something to write about.  What makes a story newsworthy?  What can we do to raise the profile of ME in the media?”

“What is needed is a concise, succinct description about ME for the news media to use.”

“How can we instigate and invigorate interest in patients to join advocacy work for ME?”

“Find the right patron in Congress to carry our banner – perhaps a newbie congressperson who is looking for a cause.”

“How can the law be used as a tool for change?  Do you think there is more potential for using the law in the US and other countries to advance ME advocacy?”

“How can we raise the funding needed for an ME lobbyist in Washington DC when we can’t even raise the funding for the much-needed research by interested and qualified scientists?”

“Change the name.  Stop using ‘CFS’.”

“Is the internet enough for an ME advocacy presence?”

The actual video lasts 1 hour and 45 minutes.  If you have the time and are keenly interested in learning about ME in the words of some of the people intensely involved, you will go away enlightened about what can be done in advocacy and you will find it to be quite compelling.

 

 

 

Llewellyn King’s long and remarkable career in journalism began in Southern Rhodesia (now Zimbabwe), where he was born and raised, as a 16-year-old foreign correspondent for Time, UPI and two London newspapers, The Daily Express and The News Chronicle.

Before starting his own publishing group, King worked for a pantheon of British and American media outlets. As editor in chief of The Energy Daily, King Publishing Group’s flagship newsletter, he became renowned for his incisive reporting and commentary on the energy industry, and for his public speaking panache.

– See more at: http://www.whchronicle.com/author/llewellyn-king/#sthash.Ge0stfCE.dpuf

Llewellyn KingLlewellyn King’s long and remarkable career in journalism began in Southern Rhodesia (now Zimbabwe), where he was born and raised, as a 16-year-old foreign correspondent for Time, UPI and two London newspapers, The Daily Express and The News Chronicle.Before starting his own publishing group, King worked for a pantheon of British and American media outlets. As editor in chief of The Energy Daily, King Publishing Group’s flagship newsletter, he became renowned for his incisive reporting and commentary on the energy industry, and for his public speaking panache.- See more at: http://www.whchronicle.com/author/llewellyn-king/#sthash.Ge0stfCE.dpuf
Llewellyn KingLlewellyn King’s long and remarkable career in journalism began in Southern Rhodesia (now Zimbabwe), where he was born and raised, as a 16-year-old foreign correspondent for Time, UPI and two London newspapers, The Daily Express and The News Chronicle.Before starting his own publishing group, King worked for a pantheon of British and American media outlets. As editor in chief of The Energy Daily, King Publishing Group’s flagship newsletter, he became renowned for his incisive reporting and commentary on the energy industry, and for his public speaking panache.- See more at: http://www.whchronicle.com/author/llewellyn-king/#sthash.Ge0stfCE.dpuf

Dr. Collins, Please Continue NIH Efforts for M.E.

In keeping with my advocacy for ME (myalgic encephalomyelitis), I have made available a letter (see link below) addressed to Dr. Collins, Director of the National Institute of Health (NIH).  It is signed by eleven members of Congress, dated March 2014.  It reminds Dr. Collins of the supportive recommendations for research and funding for ME and CFS, promised by NIH back in 2011.

We advocates will continue to attempt to bring to the forefront, recognition that M.E. is an invisible, multi-symptom, neuroimmune, chronic illness that is changing and taking, many lives of over 1 million of our nation’s citizens and between 17-20 million sufferers globally.

Congressional-letter-Dr.-Collins-March-2014-1-1

 

 

Jason Kertson, Guitar Genius, For Your Listening Pleasure

This incredible musical showcase would seem like showing off if it didn’t sound so beautiful! This talented teen isn’t just about gimmicks; he’s about making great music. Of course, if he just happens to blow your mind with his flashy skills, all the better! You won’t believe your eyes – or your ears.  The song: “Drifting,” by Andy McKee.

Just had to share this very talented young teenager’s guitar playing.  In this video he is playing 2 guitars simultaneously.  If you haven’t heard his playing before, then you’re in for a musical treat, indeed!

Our Nation’s House Has Gone Solar!

Speaking of Sunshinebright!!

I didn’t know that the nation’s house was going solar!  I found out today with the arrival of an email from the White House with that announcement and video!  Take a look:

Hi, everyone —

On America’s path toward a clean energy future, solar power is an increasingly important building block.

That’s why we installed solar panels on the roof of the White House — it’s a clear sign of our commitment to energy efficiency.

Go behind the scenes with Secretary of Energy Ernest Moniz and other experts, and take a closer look at the solar panels on the White House roof:

Learn more about the solar panels on the White House roof.

But it’s not just the White House that’s going solar.

Earlier today, President Obama announced that more than 300 organizations in the public and private sector have made commitments to advance the deployment of solar power and invest in energy efficiency.

These new commitments mean thousands of homes will go solar in the next few years, and electricity bills will be lower for more than 1 billion square feet of buildings.

Simply put, solar panels mean less carbon pollution, and more jobs for Americans — jobs that can’t be outsourced. They’re good for our energy future, and they’re good for our economy.

Last year, jobs in the solar industry increased by 20 percent. And a new American home or business goes solar every four minutes.

Find out more about this outstanding solar progress, and how it’s leading to a cleaner future and a healthier environment.

Thanks, and stay tuned,

John

John Podesta
Counselor to the President
The White House
@Podesta44

My Letter to President Obama Regarding Myalgic Encephalomyelitis

As you all probably know, from reading some of my blogs, my daughter suffers from the debilitating invisible multi-symptom chronic illness called M.E., or, myalgic encephalomyelitis.  I have joined thousands who advocate for a diagnosis criteria, referred to as the CCC (Canadian Consensus Criteria), which has been adopted by many other countries around the globe.  I believe it should be adopted by the Department of Health and Human Services.  In choosing not to adopt a researched, scientifically-approved criteria, our government is choosing to push these greatly suffering patients aside; letting them flounder without an accepted diagnosis; letting them suffer without medical treatment geared to relieving them of extreme pain and other severe symptoms; and allowing them to lose education, employment and, in reality, the full, active lives they had known before falling severely ill.

Below is a copy of my latest letter to President Barak Obama, trying to obtain attention for these chronically ill patients who, for the most part, cannot advocate for themselves.  They are too sick.

Dear Mr. President;

I have written several letters so far this year, and I have tried to explain to you the urgency for M.E. (commonly referred to as the misnomer, “CFS”), to be recognized as a REAL DISEASE. It is an invisible, multi-symptom, chronic illness, of which there are over 1 million sufferers nationally, and 17 – 20 million worldwide. There are about the same number of sufferers as from HIV/AIDS.

May 12th has been designated as International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day, and there will be a peaceful demonstration (permit has been secured) in 2 major U.S. cities: San Francisco and Washington DC, to draw attention to the disease. M.E., is a serious one that not only disables but, also, is fatal. Displayed will be pictures of deceased patients in empty wheelchairs and their obituaries read. Senator Dianne Feinstein (CA) will be given their message.

What is myalgic encephalomyelitis, and why should anyone care about something that requires 11 syllables? But that is not why Steven Straus at the NIH decided to “rebrand” myalgic encephalomyelitis (ME) as “chronic fatigue syndrome” in 1987. That name that Straus chose for this illness has resulted in decades of misconceptions. “So, you’re tired? Everybody is tired, and besides, being tired won’t kill you.”

Wrong assumptions! M.E./Chronic fatigue syndrome does not make people tired. M.E. is a neurological illness that produces inflammation in the brain; thereby, producing great pain all over the body. The inflammation is the result of an acquired immune system dysfunction which prevents the body from fighting viral invasions. There are 8 different herpes viruses that remain in everyone’s body for life. They reproduce, interfering with production of cell energy, causing abnormal bodily fatigue.

Cellular energy reduction causes abnormal heart function; blood flow decreases; lower blood flow leads to orthostatic intolerance (the inability to stand up). This leads to cognitive function decrease; students have to leave school; adults cannot function at work and lose their jobs.

Why has the Department of Health and Human Services buried this illness (M.E.) by calling it CFS? An illness which can kill a healthy teenager (David Tscherpel) after only 18 months? Food for thought.

Sincerely,

M.E./CFS International Awareness Day Demonstrations Planned May 12th for SF and DC

May 12 International Awareness Day for ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is coming up fast! This year is the 30th anniversary of the famous outbreak of “chronic fatigue syndrome” at Incline Village, Nevada, which brought the disease into the mainstream.

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There are two demonstrations planned on May 12 at noon – one in San Francisco, and one in Washington, DC. See the link for more information and to RSVP to attend. http://www.meadvocacy.org/event_calendar

If you’re unable to attend, please share this message widely on email, message boards and social media, especially to healthy people.