Llewelyn King Asking For Help- While Educating About ME

Hello!

Well-Known Member
A Letter From Llewellyn King
Friends,
This is a begging letter, and I apologize for that.

In June 2011, I created ME/CFS Alert, a YouTube Channel on Myalgic Encelphalomyelitis, also known as Chronic Fatigue Syndrome. It is a ghastly, misunderstood, and under-researched disease that indiscriminately afflicts about 1 million people in the United States.

The channel – for which I have now produced 80 videos in collaboration with my friend Deborah Waroff, a New York writer who has ME/CFS – was inspired by the outpouring of thanks – hundreds of e-mails -- I received from ME/CFS victims and their caregivers after writing newspaper columns, and devoting episodes of my television program, “White House Chronicle" on PBS, and radio broadcasts on SiriusXM and Westwood One to an understanding of the disease. It has become a lifeline for them.

There is no cure for ME/CFS. There are no established therapies. There is just a lifetime of unremitting physical and mental suffering. The horror of ME/CFS strains my ability to describe it. Some patients have written to me that they pray for death; a high suicide rate is associated with the disease.

In the Jan. 5, 2016 edition of The Stanford Daily, the university's student-run newspaper, Katie Gu wrote about what happened when ME/CFS struck a student:

Two years ago, Tom Camenzind '16 was a sophomore at Stanford, studying computer science. He had a 4.0 GPA and summer job offers from Facebook and Dropbox. According to him, his 'medical history was a clean slate.'

Then, in January 2014, he contracted a respiratory infection from which he never fully recovered.

In February and March of the same year, Tom had enough energy to complete assignments and projects but often needed to rest in bed for a day or two to have enough energy for the next day. But after contracting a second cold in April 2014, his post-exertional malaise, characterized by extreme levels of fatigue following mental or physical exertion, began to worsen.

Since late August 2015, Tom has been unable to spend more than 30 minutes at a time out of bed. He spends most of the day in his bedroom, where the lights are always off and the blinds drawn. When he's ready for his three meals, he rings a pager button, whispers to his parents what he'd like to have and then eats in a chair beside his bed. His speech is limited to simple words that meet basic needs.

... Once a voracious reader, Tom Camenzind hasn't been able to read for a whole year.

I have met quite a few ME/CFS patients, both male and female, whose lives have been cruelly sundered by this dreadful disease at different stages of life -- in childhood; in the teen and college years; in the working single and married years. Normalcy will never return in their lifetimes.

The 80 videos I have made feature the lives of victims; the work of researchers and doctors (there are only a few here and abroad); advice from advocates and communicators; and my own commentaries on the National Institutes of Health, which funds the disease at only $5 million a year, and those comforting the sick. Some of these videos have had more than 4,000 views.

But to continue to make these videos, whose aim is to “comfort the sick, educate the doctors, and shame the government into funding more research on ME/CFS,” I seek your financial assistance. Any amount you wish to contribute will go directly -- not a penny toward administrative costs – into making these videos.

You can donate to my ME/CFS Alert YouTube video campaign on GoFundMe. Here is the link to the campaign: http://www.gofundme.com/5yhjdo

I have described ME/CFS as a disease that is “hidden in plain sight.” I want ME/CFS Alert on YouTubeto continue to be a place for members of the ME/CFS community to learn about others living with the disease, medical research and treatment options. And I hope it will be a place for the general public to get to know, as I have come to, this valiant community.

If you know anyone with this disease, you will know why I have given so much of my time and assets to it. I hope you can make a contribution.

Sincerely,


Llewellyn

Telephone: (202) 441-2702
E-Mail: lking@kingpublishing.com
 

Seanko

Well-Known Member
Llewellyn's ME/CFS alerts channel on YouTube is highly recommended. Lots of videos with with well known researchers & clinicians eg Mady Hornig, Jarred Younder,Anthony Komaroff & Suzanne Vernon.

ME/CFS alerts on YouTube

Below is his interview with Mady Hornig of Columbia University in 2015

 

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