The Human Cost

Millions of people suffer from the ghastly disease known as "Chronic Fatigue Syndrome." Some can still function, with limitations, but for others life has been reduced to a dreary, pain-filled hell unimaginable to those who are not touched by the disease.

One woman has to be taken to the bathroom in a wheelchair. Another, having developed a brutal sensitivity to light, must navigate her home by touch, lights out, windows sealed against the faintest ray from the sun. Yet another spent the best part of a year living on her bathroom floor, unable to crawl back to her bed.

While the government agencies who are supposed to be helping these people continue to dance away from their responsibilities, thousands live with equally devastating horrors. Some are homebound, others bedbound; some are unable to read, others unable to speak; many require round the clock care. Yet these people - isolated, in agony, lives in ruins - still cling to hope.

For the most part, because they are too ill to participate in life in any meaningful way, these people are invisible.

Here are some of their stories.

• The Exit Project - Wheelchairs are the good news.
• The Corner Room - Life in the dark.
• Peggy Munson - Author of Pathogenesis and Stricken. 
• Dear friends - Life on the bathroom floor.
• Who is that Bubble Girl?
• Fly Away to XAND-ado, or Where Is Elaine DeFreitas?
• Mary Schweitzer - A tenured professor at Villanova University.
• My Story
• Slightly Alive - Testimony to the Chronic Fatigue Syndrome Advisory Committee of the
  Department of Health and Human Services.
• Essays - Essays, experiences, and more testimony.
• Lauren Hillenbrand - Author of Seabiscuit and Unbroken.
  • A Sudden Illness
  • Washington Post - In the final paragraphs of Page 3, Lauren speaks for me.
  • Newsweek
  • USA Today
• Michelle Akers - World-class soccer player.
• Sophia Mirza - Unable to tolerate light, sound, food, or water, Sophia died after being "sectioned" into a mental hospital by the British National Health Service, who claimed she was mentally ill. Autopsy showed “unequivocal inflammatory changes affecting the ... dorsal root ganglia ... The changes of dorsal root ganglionitis seen in 75% of Sophia‘s spinal cord were very similar to that seen during active infection by herpes viruses (such as shingles).”

These horrifying stories make me grateful that - although I can no longer work, socialize, or even shop for my own groceries - I am still able to make my own meals, get myself to the bathroom, and occasionally get out to go to a medical appointment.

But these stories also frighten me, because they foretell what is likely in store for me if effective treatments are not found soon.