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've just written another column about the importance of scientific research, highlighting Myalgic Encephalomyelitis. My syndicate, InsideSources, is distributing it to about 500 newspapers around the country. It is posted on InsideSources.com and re-posted on The Huffington Post. Already, I've received some wonderful thanks, which can be read on The Huffington Post site.
I'll keep trying to win a cure for the suffering, one column and one video at a time.
I'd like to advise you of the wonderful interview that Dr. Alan Gurwitt, a pediatric psychiatrist, gave me. I've the video of the interview, which is posted on ME/CFS Alert.
Dr. Gurwitt shines a bright light on the murky relationship between psychiatry and ME. He said he is ashamed of the role psychiatry has played in mischaracterizing ME.
I have two more interviews to post, and two more in prospect. You contributions have made my work possible -- and soon there will be more than 90 interviews on the ME/CFS on YouTube.
Recently, I traveled to Newton, MA to interview the president and board members of the Massachusetts CFIDS Association. I've just posted the interview with its president, Charmain Proskauer, on ME/CFS Alert on YouTube. It is the first in a series of episodes on the association and its work -- and the 86th episode that you've made possible through your generosity.
This is an impressive group: compassionate, dedicated and so knowledgeable. I'm glad to bring them to you.
Good news! We've now bought a camera and are able to go on the road more frequently to tape interviews with doctors, patients and advocates.
We're planning to do some interviews with members of The National CFIDS Foundation in Needham, MA.
We're all watching the funding of NIH and CDC under the Trump administration with some apprehension. Let your members of Congress know your concerns.
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.