Cuts Threaten Research for Terrible Disease Once Called Chronic Fatigue Syndrome by Llewellyn King Journalist, broadcaster, public speaker Llewellyn King is the creator, executive producer and host of “White House Chronicle,” a weekly news and public affairs program, airing nationwide on PBS and public, educational and government (PEG) access stations, the commercial AMGTV network, and SiriusXM Radio. King writes a weekly column for the InsideSources Syndicate. King was the founder and publisher of The Energy Daily. The newsletter was the flagship of his award-winning King Publishing Group, which he sold in 2006. The group’s other titles included Defense Week and New Technology Week. In 2011 he created a charity for Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome. The charity has a YouTube channel, ME/CFS Alert. When you are sick, very sick, you wait for medicine to work its magic. But if the disease is Myalgic Encephalomyelitis (ME), you have to wait for the medicine to be invented. The bad news is that so little funding is going into solving the ME problem, commonly known as Chronic Fatigue Syndrome, that those sick today may be sick for the rest of their lives. They are living a life that is a nearly intolerable to themselves and a massive burden to their loved ones, spouses, parents and caregivers. What is known is that ME is a disease of the immune system. It is vicious and debilitating, leaving the patient confined to a marginal life, a parallel and unequal existence. Most infections are of healthy people who are struck down often, but not always, after exercise. The first symptoms can be flu-like: The sufferers feel a few days in bed will do the trick. But having ME is a life sentence. There also have been group infections, known as “clusters,” where hundreds www.investinme.org have been stricken. If you have ME, the least exertion can force you to spend days in bed, exhausted, hurting in myriad ways from headaches to what one woman described as “feeling like your bones are exploding.” In severe cases, the patient cannot tolerate light or sound. A young man, newly married, and felled unaccountably, had to live in a closet for an extended period before he could handle light and sound. Symptoms vary but most of the time a victim feels, as one told me, “like you are a car that has run out of gas and your tank cannot be filled up again.” A teenager told me that if she is to go out with friends, she has to weigh that against days of bed rest, in a complete state of collapse. The National Institutes of Health (NIH) ― the principal researcher into ME and dozens of other perplexing diseases ― has historically given ME a pittance. In the last three years funding has been held to $5 million a year, although the Obama Page 34 of 82

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