NCF Banner



From Fall 2011 Forum

YOUNG PEOPLE'S VOICE — In memory of Allie Hunter who was a YPME/C (Young Person with myalgic encephalomyelitis/CFIDS) who died of complications at age 19. We welcome stories and input from YPME/C and/or their families.

"I cannot wait to get back to being a normal teenager" began a story in the UK's Shields Gazette in early August. The words were spoken by Jessica Thompson from Harton who is a 14-year-old who has CFIDS/ME. Jessica hasn't been able to attend school or to participate in performing arts for many months. Adding to her misery of often being confined to a wheelchair are the rumors of classmates that she was kicked out of Harton Technology College, that she was pregnant or that she was just lazy. Jessica took part in drama and music performances and was involved with some younger scouts but now needs to be tutored.

Like most patients, Jessica pushed and pushed to go to school but she found she had to push too much and was "picking up viruses". Like all kids with CFIDS/ME, Jessica would love to be able to go shopping and go to parties. "I just want to tell people, just because we look O.K. doesn't mean we are. The next day we will probably be in bed." She said, like most patients, they'll "normally lie about how they are feeling." The story seemed to illusrate how important our Children's Packet is for parents of children with CFIDS/ME that helps parents advocate as the story's headline was "Cruel Taunts as Teen Battles Health Condition".

Jessica isn't alone. This article was printed in a 2005 issue of The National Forum and the only thing that has really changed to this day is, finally, the AACFS (now callled the IACFS) has recognized a pediatric definition which is part of our Children's Packet.


By Beverly Coleman

There are kids in middle school who are headed somewhere and there are those merely just scrape by. For the first six years of school, I was headed somewhere with little effort. I was at the top of my class. I got straight A's. All my papers had gold stars. And then came algebra. There were no more gold stars. I lacked the essential knowledge that every other kid had. The simple rule of factor times factor equals product stayed foreign to me. There I was, alone at the blackboard, with humiliation as my only companion.

Many things are not factored into a report card. Patience, kindness, loyalty, curiosity, dependability, steadfastness and pure grit don't matter. The predictor of a good life is to score well and you'll do well in life. The teacher told me I'd never get into college and if I did, I'd only last one semester. I had nightmares about not making it to high school graduation and having the class called up in order of class rank. There were winners and losers and I seemed destined to be a loser.

I did graduate. And I did get into college. And I didn't last just one semester. But I didn't graduate from college. Instead, my health got worse and worse. From periodic sore throats and swollen glands, I moved on to nearly constant ear infections and difficulty breathing. I couldn't concentrate and my fevers kept reoccuring. The school nurse was baffled. The doctors were baffled. I went from doctor to doctor seeking an answer. The answer turned out to be M.E. Myalgic Encephalomyelitis, it seems, had begun many years ago when I found my brain just couldn't grasp algebra. The cognitive problem is one of the hallmarks of this neurological disease. As I got older, I worsened until, finally, one physician recognized what was wrong with me and diagnosed me correctly.

Today there are testing procedures for students to test their academic skills and see if they are "proficient or above". These tests label a child. They are broadcast in the news and headlined in the newspaper. When a child fails, the teacher, the school, their parents, and even the community are judged to be lacking. What if some of these children are merely victims of a disease that is lying partially asleep only to be reawakened when the time is ripe (or the immune syetem is hit by a trigger)? What is happening to these children who are labeled today only to find out, some tomorrow in the far future, why they couldn't grasp algebra? Is knowledge really everything? Is it a guidepost to the good life? If you are not able to obtain it fully, are you doomed for the rest of your life? Or is it really a nasty scourge that has overtaken your body and made life so agonizing that has doomed you?

I wasn't a "perfect" child. Like all children, I did things I was punished for. But I didn't pull wings off of butterflies and I didn't side with the class bully or plan evil things for those I disliked. I can't think of one thing that made me deserve a punishment like M.E. I consider myself an innocent victim of fate. I was unlucky.

How many children are suffering this very day? How many are being humiliated at the blackboard? How many are being told they are not destined to be a "success" but are only "losers"? How many of these thousands or millions will the "educational efforts" of the Centers for Disease Control and Prevention/CFIDS Association of America pinpoint? One? None? Adults are capable of knowing when something is wrong and often can persue answers. Children cannot. They are the object of derisive laughter. They are the "losers" in life.

A few years after I was diagnosed with M.E., one lone pediatritian in the United States, David S. Bell, M.D., asked the American Association of Chronic Fatigue Syndrome (AACFS) to consider a children's clinical diagnostic guide. They didn't. They wouldn't. They still haven't. How many children are still suffering today that have M.E. (now called chronic fatigue syndrome) and don't know it because nobody has tried to alter the state of ignorance that continues to exist to this very day?

I remember the gold stars. It's been years and years, but I remember being labeled. The memories are still vivid. I remember the anguish. I think of all those children who are still undergoing the same humiliation today because they are innocent victims. We must rely on a voluntary group of patients to make this change. I am so grateful that this group, the National CFIDS Foundation, has stepped up to bat to find answers that will change lives forever but I remain angry at those who have promoted themselves yet refused to do the things that will help. I am sorry for those who have tried to help and gotten nothing but frustration for their efforts. At hundreds, perhaps millions of schools across the nation, there are children who are the "losers" through no fault of their own. For their sake and for our sake, I hope the future will be different.

The NCF recently heard of another middle school child who was diagnosed due to our booklet, Guidelines for Schools. We're grateful that E.R. took the time to request and distribute these booklets to his area schools in Arizona last May for Awareness Day. The child's mother wrote, "Your booklet was a wake-up call to the school nurse and led, finally, to a correct diagnosis for our daughter."

In early Autust, a 12-year-old girl from Spain who, like her mother, has been diagnosed with ME by more than one specialist, had two policemen take her to a psychiatric ward via orders from a judge and not permit her mother to even see her. The judge had previously had the school send a tutor to the girl's home but the mother and daughter were also required to see a psychologist. A charity in Spain has plans to hire lawyers to fight this injustice.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606