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
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
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
overtaken me. I am making this statement to convey my concern at the
psychologising of ME, now often referred to under the umbrella of
World Health Organisation defines ME as a neurological condition. It
a potentially severe, chronic illness that leaves many children
paralysed and in need of feeding by tube. It is thought by many
to be a relative of poliomyelitis and there is certainly much
support this view.
if this were not dreadful enough, imagine the horror of the children
their families when either they or their parents are accused of
illness. It can hardly be described."
have your sick child taken from you, to be suspected of damaging
yourself, just when they most need your care, is an appalling
For the children it is traumatic and it may be that some will never
emotionally from having been snatched away from their sick bed and
of their mother s love."
this is still going on. It is happening because of the
ME by the psychiatric lobby, a group of psychiatrists who resigned
Chief Medical Officer s Working Group that was trying so hard to
sensible and balanced recommendations."
The Young ME Sufferers Trust we have to help parents cope with
misery and injustice, everything from allegations of child abuse to
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
we ourselves worked for 3 years, there seems to be little difference
number of these cases."
that report, published by the Dept of Health in 2002, made two key
In cases of CFS/ME, evidence clearly suggestive of harm should be
obtained before convening child protection conferences or initiating
proceedings in a family court."
2. Neither the fact of a child or young person having unexplained
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
mother who has experienced this injustice:
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
the house into her bedroom and flung the light on, then turned round
left. He said that social services were now investigating."
rest of the staff behaved really nastily to my daughter and were
obstructive. The paediatrician was willing to do a home visit but
GP referral. The surgery staff told me they would send the referral
hospital. We rang many times during the following weeks and each
told that the letter had been sent."
weeks later the paediatrician s secretary contacted us, concerned
she still had not received the letter. The GP's secretary admitted
hadn't even been typed. We do not know if it had been written at
paediatrician insisted it be faxed to her that day."
school implied that it was my daughter s fault that she was ill.
not as if she had leukaemia, they said.
When I and Dr Elizabeth Dowsett researched ME in schools, we
it was the biggest cause of long term sickness absence in schools.
research appeared in the Journal of Chronic Fatigue Syndrome in 1997
made front page headlines. It was everywhere, starting with the top
spot on GMTV."
response of the British Medical Journal was to mount one of the
attacks in its history, both upon the research and upon us, accusing
later the BMJ published our rebuttal of these accusations under the
headline: Journal was wrong to criticise study in schoolchildren."
was at least a partial redress for the wrong we ourselves had
But that is nothing to the wrong that is being done to the children."
statistics about how children with ME are being treated come from a
study we did for our recent report The Forgotten Children, published
year, now available online and also presented to Downing Street.
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.
bullying primarily cited medical and educational professionals.
Happily, the Trust works with many doctors and teachers whose
exemplary and we know that not everyone has this experience. But the
statistics speak for themselves."
am myself a former head teacher who left teaching after a severe
infection related to polio myelitis disabled me. I am myself an
the illness that has been so cruelly mistreated."
climate is beginning to change. The Young ME Sufferers Trust has
from the Prime Minister, who sent us, uninvited, a glowing
our work. Many other prominent people from all walks of life have
same, including well-known celebrities."
change within the professions comes more slowly.
For true change to be achieved, we have to stop this knee-jerk
anything we cannot easily understand must be imaginary, or caused by
mind alone. This reaction is born of the old image of the doctor as
That went out with the ark."
modern doctors, secure in themselves and in an adult relationship
their patients, are happy to say: We do not yet fully understand the
illness, whilst also accepting that it is a genuine, severe
This enables us to search for causes and cures without prejudice,
the sufferers to be supported with compassion and practical help."
not rocket science. It's just common sense."