b Llewellyn King article – Chronic Fatigue Syndrome: Hidden in Plain Sight | Voices from the Shadows Voices from the Shadows

Llewellyn King article – Chronic Fatigue Syndrome: Hidden in Plain Sight

Chronic Fatigue Syndrome: Hidden in Plain Sight –  by Llewellyn King 

The full article is at http://open.salon.com/blog/llewellyn_king/2013/03/30/chronic_fatigue_syndrome_hidden_in_plain_sight

Quotes – “I am a reporter and my beat is hell.…

…. It is the hell of those who live with a disease that is incurable, has inadequate therapies, indifferent government attitudes, social stigma and no strong public voice…

I have heard from patients all over the world, but those in Britain are among the most pitiful. The National Health Service has favored low-cost psychiatry over high-cost internal medicine…. The medical hell about which I write is without national borders.

I find the patients, who have e-mailed me and whom I have met, to be angry as well as desperate. They wonder why have they been abandoned? Why do other diseases get more attention when they have fewer sufferers? Why is the media so indifferent to them? Why does the government spend so, so little (about $6 million a year) on researching a cure?

All that is incontrovertibly known about CFS is that it is a disease of the immune system. It kills slowly through heart disease and cancer. It also has a high suicide rate.

There is a sore irony that nowadays HIV/AIDS, which affects 1.1. million people in the United States and 34 million worldwide, is almost without stigma and has many public advocates – and many celebrity advocates like pop superstar Elton John — raising money for research.

CFS patients feel they are stigmatized, and often are, as malingerers.  …

Screen Shot 2013-04-01 at 12.29.25One million CFS sufferers in the United States and millions more elsewhere  will continue to suffer until society gets behind the moral  imperative of researching a cure. The immediate needs are to comfort  the sick, educate the doctors and shame the government.”

Llewellyn King is executive producer and host of “White House Chronicle” on PBS. His YouTube channel ME/CFSAlert. now has 41 interviews with doctors, researchers and others involved with ME and CFS.