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.
Creator and Co-host
I have attached the last episode of ME/CFS Alert on YouTube for 2016. Those who are suffering from ME and their caregivers can take a cup of kindness in this: 2016 was a year in which there was sustained progress in medical research and more public awareness about the disease.
I mentioned ME in my year-end column about "The Overcomers," which was published by newspapers around the country. Here is a link to it on the White House Chronicle website:
In 2017, Deborah Waroff and I will continue to comfort the sick, educate the doctors and push the government to fund more ME research through our YouTube channel and my writing and radio and television broadcasting.
You are not alone.
I'm glad to say the latest post on the ME/CFS Alert channel on YouTube is proving very popular. In a month, it has climbed in viewers to more than 600 -- and shows no sign of stopping.
It's an interview with Dr. Anthony Komaroff, the distinguished Harvard Medical School clinician and researcher. I interviewed him in his home outside Boston.
Another major player in the field, Dr. Nancy Klimas, was interviewed in Florida recently by Deborah Waroff. Her interview will be posted shortly.
None of this would've happened and we wouldn't have reached Episode 85 without your ongoing and generous support.
I thank you on behalf of those who are helped, informed or inspired by these videos.
The latest episode of ME/CFS Alert on YouTube draws attention to a book by Valerie Free, entitled "Lighting Up a Hidden World: CFS and ME."
In it Valerie shares her own experience with the disease and perspectives of patients, caregivers, physicians and others through a unique combination of artwork, poetry and storytelling.
It is a long book, but the segments are short and readable. They invite the reader to dive in again and again. You can purchase it on Amazon, and I hope you do.
As always, thank you for your invaluable support.
I have posted a new episode -- Episode #82 -- on ME/CFS Alert on YouTube.
In this episode, I traveled to western Massachusetts to interview Erica Verrillo, who suffers from ME and is forming a new group focused on helping fellow sufferers. She is a compassionate and dynamic woman.
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
Thank you for caring about this "invisible disease". I suffer immensely with this, and it is difficult to keep hoping for relief.
Just want to say a massive thank u I have m.e