Llewellyn King’s latest piece about ME, “Chronic Fatigue Syndrome: The Silent Suffering,” was published today in the Open Salon. Mr. King, with his signature style of elegant and no-nonsense language, achieves what is so elusive for most writers: to give the reader a hint of what it’s like to live with ME. Here are the highlights:
“… of all the big diseases, [ME] is probably the least publicized, least talked about, and the most ignored in medical institutions…”
“As AIDS was initially, [ME] is haunted by fear, stigma and ignorance. It is misdiagnosed and often its victims are abused, thrown out of their families, and live in squalor and pain with little hope. They despair that they cannot convince doctors, their families or their loved ones that they are, in fact, sick.”
“… in that world of anguish, where the victims feel they are to blame because they are a burden to those who love them.”
“Most doctors are not qualified to offer [ME] diagnoses …”
“Suicide is common …”
“… an experimental drug, Ampligen, is helping a patient elite of about 750: They can get the drug in limited trials and can expect to pay between $25,000 and $40,000 a year for it.”
One clarification regarding the last quote: According to information published by Hemispherx, the maker of Ampligen, earlier this month, there are currently only 26 ME patients on Ampligen–no doubt due to the fact that the price tag puts this drug out of reach of most people. I am one of the lucky few who may soon join the ranks of Ampligen recipients. 750 may be the total number of ME patients who have received Ampligen over the course of the last few decades, although I believed that number to be closer to 500, but I am not certain.
I feel the greatest gratitude towards Mr. King for his unwavering support.