chronic fatigue syndrome, cfs, chronic fatigue immune dysfunction, cfids, myalgic encephalopathy, fibromyalgia, fms, Forum,  myalgic encephal, m.e., low blood volume, neurotoxin, orthostatic intolerance, multiple chemical sensitiv, National CFIDS Foundation, chronic fatigue, NCF Forum newsletter, chronic illness

Young 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 all YPME/Cs and/or their families.

     Anthony is just 17 and he's had ME/CFIDS for years.  He hasn't been able to attend school in years.  Just three years ago, his mother, Shannon McQuown, found herself battling his school system to fight for the right accommodations and modifications needed for her son.  It was an uphill battle and she often felt she was at a dead end, but she was well versed in special education and kept at it until she was successful.  Anthony has proven to have been well worth the effort.  He was invited into the Honor Society and he received the award for the highest GPA in applied geometry!  He also got an award for accumulative scores of 3.5 or above.  It hasn't been easy for him, either.  But he has a 96 average in a class who averages 80. 

     Shannon has spoken to educators across the United States.  When a mother who has a child with ME/CFIDS contacts her, she sets up a meeting with the school nurse, teachers, administrators, and related services and tells them exactly what ME/CFIDS is.  She found slides she uses for her presentation of the brain to help explain what the child is dealing with, what brain profusion is, and what areas of the brain are particularly impacted.  As Shannon says, "It's a big reality check for the educators."  If your child is having difficulty with the school system, give Shannon a call  (540-720-2901) or e-mail her at  Children need advocates and Shannon can help!

     Shannon has been appointed to the Special Education Advisory Committee and continues to be a warrior for children with ME/CFIDS.  She's also written a book that we hope will be available soon.

     DePaul University has a chronic illness initiative where there's an online college attendance. Attendance is either with or without actual campus presence.  A degree can take as long as necessary to complete and, should the young adult find themselves unable to "attend" for a time due to health reasons, they are allowed to resume where they left off when they are again able.  Those who are interested can contact Lynn Royster, PhD at 312-362-8001.

"Chronic fatigue syndrome in children: a cross sectional survey," is the title of another coverup of the truth by Chalder, Wessely, et al. (Arch Dis Child, 2003 Oct, 88/10).  The British psychobabblers call it "a controversial diagnosis with unclear etiology, ill defined but likely increasing incidence…"  In answer, Dr. Charles B. Shepherd wrote, "…¦It is hardly surprising that the authors '…found no concordance between parental labeling that a child had myalgic encephlomyelitis and operationally defined chronic fatigue' given the fact that the diagnostic criteria for ME/CFS are poorly defined in children…and while children usually have the same key symptoms as adults, they frequently report other symptoms such as abdominal pain, nausea, and variations in appetite, which are far less common in adults.
     "Neither am I convinced that reliable diagnostic information can be obtained by simply asking whether a child had '…been feeling more tired and worn out than usual' along with some follow-up questions (presumably by telephone) if the answer was affirmative.  The only way to solve the problem of eliminating subjects with a misdiagnosis of ME/CFS (which can range from school phobia to other neuromuscular disorders) and include those where the diagnosis has been missed is through proper clinical assessment involving history, examination and investigations where appropriate…"

     Jane C. Colby, the Executive Director of the Tymes Trust (The Young ME Sufferers Trust) of England also challenged the study.  She wrote, "Introducing the study, Chalder et al state: 'We are unaware of any population studies in the United Kingdom that examine the prevalence of and factors associated with chronic fatigue syndrome in children.' They seem unaware that Dowsett and Colby revealed that 51% of long-term sickness absence in UK schools in a population of 333,024 pupils in such widely spaced local education authorities was due to CFS/ME, making it the biggest cause of such absence. (JCFS, vol. 3, 1997, available in our Children's Packet)  That finding was repeated in Garralda et al (J Royal Society of Med, 2000, Vol. 93).

     "Chalder et al write: 'Parental report of myalgic encephalomyelitis  or chronic fatigue syndrome was associated with maternal distress.' Amazing.  Whilst the earth-shattering discovery that parents of sick children are distressed is welcome, the suggestion that psychiatric disorder may account for mothers labeling their children with ME can only increase mistaken allegations of child abuse.

     "Chalder also appears unaware of psychiatrist Michael Shanks' research showing that CFS/ME patients seem 'no more prone to overt psychological disorder before the illness than the general population.' (Brit J Psych, 1995, Vol. 166)  I have twice asked why her views contradict clinical findings by Dr. Shanks' colleague on that paper, consultant microbiologist and CFS/ME specialist Dr. Darrel Ho-Yen, regarding the effectiveness of 'napping' for ME patients.  Both times she publicly confessed to being 'unaware' of 'Dr. Yo-Hen's' (sic) work.  There seems no end to Dr. Chalder's worrying unawareness."

     Among the 25 responses to this article was a letter from a parent, Richard Simpson, who wrote, "My God!  When will these people ever learn?  I have two daughters suffering from this god-forsaken illness which the medical community can't come to terms with or cure.  CFS?  ME?  Not even sure which one to use.  Doctors and 'experts' alike seem to be confused as to which to use.  It's all lumped together as a term with nothing being offered officially but counseling, graded exercise and other simplistic solutions to coping with it.

     "And here we get yet another irrelevant document.  As if we didn't have enough to cope with in convincing doctors, schools, social services…we have to contend with this biased approach from the psychiatric community…"

     Despite the number of responses, Trudie Chalder et al made no response of their own.  We were also disappointed that there was no letter from the United States.  In years past, both our government and the American Association of Chronic Fatigue Syndrome have resisted having a pediatric definition.  Is it too much to hope that the new CFSAC will finally address this problem?

  •      Again, we'd like to quote Jane Colby, the Executive Director of The Young ME Sufferers Trust, also known as the Tymes Trust of England: 

    "It is with great regret that I am unable to be here today as the flu has overtaken me. I am making this statement to convey my concern at the psychologising of ME, now often referred to under the umbrella of Chronic Fatigue Syndrome.

         "The World Health Organisation defines ME as a neurological condition. It is
    a potentially severe, chronic illness that leaves many children partially
    paralysed and in need of feeding by tube. It is thought by many virologists
    to be a relative of poliomyelitis and there is certainly much evidence to
    support this view.

         "As if this were not dreadful enough, imagine the horror of the children and
    their families when either they or their parents are accused of faking the
    illness. It can hardly be described.

         "To have your sick child taken from you, to be suspected of damaging them
    yourself, just when they most need your care, is an appalling experience.
    For the children it is traumatic and it may be that some will never recover
    emotionally from having been snatched away from their sick bed and deprived
    of their mother s love.

         "Yes this is still going on. It is happening because of the psychologising of
    ME by the psychiatric lobby, a group of psychiatrists who resigned from the
    Chief Medical Officer s Working Group that was trying so hard to produce
    sensible and balanced recommendations.

         "At The Young ME Sufferers Trust we have to help parents cope with unbearable misery and injustice, everything from allegations of child abuse to a denial
    of the children s rights to a suitable education for their needs and
    Even after the publication of the Chief Medical Officer's Report, on which
    we ourselves worked for 3 years, there seems to be little difference in the
    number of these cases.

         "Yet that report, published by the Dept of Health in 2002, made two key

    "1. In cases of CFS/ME, evidence clearly suggestive of harm should be
    obtained before convening child protection conferences or initiating care
    proceedings in a family court.

    2. Neither the fact of a child or young person having unexplained symptoms
    nor the exercising of selective choice about treatment or education
    constitutes evidence of abuse.

    These recommendations are being widely ignored.
      Here is a typical statement from our report The Forgotten Children by a mother who has experienced this injustice:

    "When my young daughter was very ill, had paralysis, couldn't sit up and
    struggled to eat from a spoon, our doctor shouted at her.
      He told me that it wasn't as if she had MS. Another time he stormed through the house into her bedroom and flung the light on, then turned round and left. He said that social services were now investigating."

    "The rest of the staff behaved really nastily to my daughter and were
    obstructive. The paediatrician was willing to do a home visit but needed a
    GP referral. The surgery staff told me they would send the referral to the
    hospital. We rang many times during the following weeks and each time were
    told that the letter had been sent.

    "Eight weeks later the paediatrician s secretary contacted us, concerned that
    she still had not received the letter. The GP's secretary admitted that it
    hadn't even been typed. We do not know if it had been written at all. The
    paediatrician insisted it be faxed to her that day.

    "The school implied that it was my daughter s fault that she was ill. It's
    not as if she had leukaemia, they said.

    When I and Dr Elizabeth Dowsett researched ME in schools, we discovered that
    it was the biggest cause of long term sickness absence in schools. Our
    research appeared in the Journal of Chronic Fatigue Syndrome in 1997 and
    made front page headlines. It was everywhere, starting with the top news
    spot on GMTV.

    "The response of the British Medical Journal was to mount one of the nastiest
    attacks in its history, both upon the research and upon us, accusing us of
    research bias.

    "Months later the BMJ published our rebuttal of these accusations under the
    headline: Journal was wrong to criticise study in schoolchildren.

    "This was at least a partial redress for the wrong we ourselves had suffered.
    But that is nothing to the wrong that is being done to the children.

    "Further statistics about how children with ME are being treated come from a
    study we did for our recent report The Forgotten Children, published this
    year, now available online and also presented to Downing Street. Here are
    just a few:

  • 87% had to struggle for recognition of their needs

  • 81% had moved school to get recognition of their needs

  • 84% had felt threatened by attitudes of professionals.

    "This bullying primarily cited medical and educational professionals.  Happily, the Trust works with many doctors and teachers whose attitude is
    exemplary and we know that not everyone has this experience. But the
    statistics speak for themselves.

    "I am myself a former head teacher who left teaching after a severe viral
    infection related to polio myelitis disabled me. I am myself an example of
    the illness that has been so cruelly mistreated.

    "The climate is beginning to change. The Young ME Sufferers Trust has support from the Prime Minister, who sent us, uninvited, a glowing endorsement of our work. Many other prominent people from all walks of life have done the same, including well-known celebrities."

    "But change within the professions comes more slowly.  For true change to be achieved, we have to stop this knee-jerk reaction that anything we cannot easily understand must be imaginary, or caused by the mind alone. This reaction is born of the old image of the doctor as God.  That went out with the ark."

    "Truly modern doctors, secure in themselves and in an adult relationship with
    their patients, are happy to say: We do not yet fully understand the
    illness, whilst also accepting that it is a genuine, severe disability.
      This enables us to search for causes and cures without prejudice, and for
    the sufferers to be supported with compassion and practical help.

    "It's not rocket science. It's just common sense."

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