ME/CFS Alert

$19,013 of $20,000 goal

Raised by 187 people in 55 months


Journalists don't expect thanks for their work. But in my 58-year career as a journalist, I've never received such an outpouring of thanks "“ hundreds of e-mails "“ as for the syndicated columns, radio and television programs that I've devoted to an understanding of Myalgic Encelphalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Some of these letters can be seen on my Web site, whchronicle.com

These profound thanks from the sufferers in the United States and around the world inspired me to launch ME/CFS Alert, a YouTube channel, in June 2011. The channel has become a lifeline for the ME/CFS community -- many of whom are bedridden.

There is no cure for the disease; there are no established therapies. There is just a lifetime of pain, dependence, disorientation, loneliness and unremitting suffering. The horror of this disease strains my ability to describe it.

Knowing patients, I feel that I've looked into hell -- a hell that I can look away from, but they can't. Some have written to me that they pray for death; a high suicide rate is reported.

The first video episode featured commentary by Deborah Waroff, a New York author and the channel's co-host, who has battled ME/CFS for 25 years. It also featured an interview with Dr. Derek Enlander, a pioneering researcher in therapies for ME/CFS, who practices in New York City.

The aim of ME/CFS Alert is to comfort the suffering, educate the doctors, and to shame the government into allocating further research dollars. There are now more than 50 informative videos on the channel, consisting of interviews with doctors, patients and advocates.

But to continue to make these videos, I seek your financial assistance. Any amount you wish to contribute will go directly (not a penny toward administrative costs) into making these videos as helpful as possible to everyone afflicted with ME/CFS -- a disease which I've described as "hidden in plain sight."

I want ME/CFS Alert to continue to be a place for members of the ME/CFS community to learn about others living with the disease and 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 someone with this disease, you'll know why I've given so much of my time and assets to it. I hope you can make a contribution.

Llewellyn King
Creator and Co-host
ME/CFS Alert
+ Read More
Dear Friends,

I'm excited to share an interview I did at Brigham and Women's Hospital in Boston with Dr. David Systrom. It's Episode 98 -- and it's one of the most compelling that I've done for ME/CFS Alert on YouTube.

Dr. Systrom discusses how an interest in exercise intolerance led him to Myalgic Encephalomyelitis. He talks about his work, a new research incubator he's assembled, the testing of an old medicine, Pyridostigmine, on ME patients, and the importance for researchers to talk to each other.

He covers a lot of ground and it's all critically important stuff.

Your contributions have made this and other episodes possible. Thank you so much.

Best wishes,

Llewellyn
+ Read More
Dear Friends,

I'm glad to be able to tell you that my recent interview with Michael VanElzakker of Harvard and Massachusetts General Hospital has been very well received. He does extraordinary research on the Vagus nerve and the brain's role in ME. Like many, he came to ME because of a sick friend.

Incidentally, we have some extraordinary YouTube viewership numbers -- with some episodes garnering more than 5,000 viewers. These include Deborah Waroff's interview with Dr. Kenny De Meirlier at 6,500 views, and my interviews with Dr. John Chia at 5,500 and the Camenzind family at 5,100. All of the episodes get new viewers as time goes on. We now have 97 episodes posted on YouTube. As supporters of this effort, you should be very encouraged.

I've just written an op-ed column for my syndicate on the upcoming ME demonstrations in Washington, D.C. on May 12 and lobbying on May 15. It can be found on whchronicle.com.

Thank you for your continuing support.

Allbest,

Llewellyn
King and VanElzakker of Harvard, MGH
+ Read More
Dear Friends,

I'm delighted to be able to tell you that because of your support, I've been able to produce a new video for ME/CFS Alert on YouTube. It's an interview with the nation's top expert on viruses, Dr. Ian Lipkin of Columbia University.

Recently, Dr. Lipkin's research on Myalgic Encephalomyelitis has received support and recognition from the National Institutes of Health. He is directing one of the four new NIH-funded centers that will be investigating the disease.

Dr. Lipkin is one of our champions. I've attached the video, which has been enthusiastically received in the ME/CFS community.

As always I wish you the best, and thank you so much for your support of this work.

Llewellyn
Columbia U's Dr. Lipkin on ME Research
+ Read More
Dear Friends,

I'm very glad to report that ME/CFS Alert Episode #93, telling the story of Tom Camenzind and his parents heroic fight for a cure for ME, has now reached more than 3,500 views on YouTube.

The latest episode, #94, represents an important breakthrough because it is the first time we have filmed inside the National Institutes of Health. In this episode, I interviewed Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders, and Dr. Zaher Nahle, chief scientist and vice president of research at the Solve ME/CFS Initiative. The initiative was instrumental in this filming.

Coming up is a very important interview with Dr. Ian Lipkin, the nation's foremost virus hunter and one of the leading ME researchers. This will be filmed in Dr. Lipkin's office in the Mailman School of Public Health at Columbia University.

Your support keeps this effort going.

Best,

Llewellyn
NIH's Dr. Koroshetz Talks About Research
+ Read More
Read a Previous Update
Annette Wilford
54 months ago
1
1

Just want to say a massive thank u I have m.e

+ Read More
Sandi Harrington
10 months ago

Thank you Llewellyn and associates for not forgetting us, and for letting the world know about ME while we often cannot. We long for the cure. We also look forward to the time when the CFS moniker is dropped, a term for a completely different condition, a psych condition, that was convenient for the insurance companies and government to hang on ME patients in the beginning. They did likewise to diabetics in the beginning. Thanks to anyone considering helping with this mysterious immunological and neurological disorder that has robbed millions of their lives.

+ Read More
Sharon Campbell
11 months ago

Thank you for all you do for us suffering MECFS.

+ Read More
Geoffrey Brown
44 months ago

why oh why cannot people sort this name out they are two different problems me is myalgic encephalomyelitis and cfs is invented to explain a sick building syndrome caused by many factors not the lest an attempt by the cdc to create confusion to save millions of dollars in welfare payments

+ Read More
Laura Fiorello-Squitieri
52 months ago

Thank you for caring about this "invisible disease". I suffer immensely with this, and it is difficult to keep hoping for relief.

+ Read More

$19,013 of $20,000 goal

Raised by 187 people in 55 months
Created December 29, 2013
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
$200
Anonymous
19 days ago
JP
$150
Jane Pannell
19 days ago

Thank you, Llewellyn. You give us hope.

$250
Anonymous
3 months ago
MC
$200
Mark Camenzind
3 months ago

Thanks for all you do for M.E. and the #MillionsMissing with this #ForgottenPlague. Hope more people can support you and other leading orgs incl SolveCFS.org etc

RS
$100
Robert Schock
3 months ago

Llewelyn. Congratulations on your efforts

$25
Anonymous
3 months ago
$20
Anonymous
4 months ago
LT
$1,000
Linda Tannenbaum
4 months ago

Keep up the great work Llewellyn!

Annette Wilford
54 months ago
1
1

Just want to say a massive thank u I have m.e

+ Read More
Sandi Harrington
10 months ago

Thank you Llewellyn and associates for not forgetting us, and for letting the world know about ME while we often cannot. We long for the cure. We also look forward to the time when the CFS moniker is dropped, a term for a completely different condition, a psych condition, that was convenient for the insurance companies and government to hang on ME patients in the beginning. They did likewise to diabetics in the beginning. Thanks to anyone considering helping with this mysterious immunological and neurological disorder that has robbed millions of their lives.

+ Read More
Sharon Campbell
11 months ago

Thank you for all you do for us suffering MECFS.

+ Read More
Geoffrey Brown
44 months ago

why oh why cannot people sort this name out they are two different problems me is myalgic encephalomyelitis and cfs is invented to explain a sick building syndrome caused by many factors not the lest an attempt by the cdc to create confusion to save millions of dollars in welfare payments

+ Read More
Laura Fiorello-Squitieri
52 months ago

Thank you for caring about this "invisible disease". I suffer immensely with this, and it is difficult to keep hoping for relief.

+ Read More
or
Or, use your email…
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.