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Yount People's Voice: Allie's Garden

Allie Hunter was a YPME/C (Young Person with myalgic encephalomyelitis/CFIDS) who died of complications at age 19.  We welcome stories and input from YPME/Cs and/or their families.

We knew it was just a matter of time before the psychobabblers attacked the children with CFIDS/ME and we were right.  "Chronic fatigue syndrome in childhood" offers nothing of value to our knowledge and will only serve to hurt those who are victims of this disease (J Child Psychol Psych, Nov. 2005, 46/11).  The authors say "comparatively little attention has been given in the literature to management" but they didn't search hard enough.  While all they have to offer is CBT (cognitive behavioral therapy), our Children's Information Packet (see #5 on material's list) offers a 1997 article from the Journal of Chronic Fatigue Syndrome called "Management of Chronic Fatigue Syndrome in Children: A Practicing Clinical Approach."  The article, by Charles W. Lapp, M.D., explains that symptoms such as "difficulties with memory, concentration, comprehension, recall, calculation and expression" along with "a sleep not uncommon.  All of these symptoms are aggravated by even minimal physical exertion or emotional stress."  Although Dr. Lapp could not give specific treatments, he advocates supportive and symptomatic treatment, lists accommodations and even lists alternative therapies that are not dangerous as well as those that "may be risky."  If they were looking just in the UK, these authors should have found "Children With M.E." (Feb. 1999), a report by an independent group of advisors.  They, too, include management and note the differences found in somatization and other mental categories. Dr. Charles Shepherd and Dr. Abhijit Chaudhuri from the UK wrote "ME/CFS/PVFS: An exploration of the key clinical issues" which includes "Children and Adolescents" and has a guide for differential diagnosis. The finger of shame is pointed at veteran psychobabbler, Trudy Chalder and the UK psychiatrist who joined her in writing the misleading article, M. Elena Garralda.

The following first person account was sent to us by a patient who began her struggle with  CFIDS/ME as a child. 

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 reocurring.  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 system 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 pursue 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 pediatrician 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" though no fault of their own.  For their sake and for our sake, I hope the future will be different.

A study into the biochemical markers of children with CFIDS/ME began last spring and is exected to be finished by the fall of 2006.  While scientific studies of adult CFIDS/ME has been sparse, it has been nearly non-existent in children.  The study was funded by two groups and is being done in England.

David Newnham wrote a story carried by The Times (London, Oct. 28, 2005) on CFIDS/ME in children.  It noted that "only a small percentage of sufferers return to normal health" and that "medicines have no affect."  In addition to the problems it causes to school absences, the article noted that recently published work on genes headed by Dr. Jonathan Kerr from St. George's University in London found several gene abnormalities that were involved with the mitochondria (the energy portion of the cells) as well as one that pointed to a viral infection. 

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