Authors: Christine Hunter, Annette Leggo, Anne Gotsis and Maureen Stephenson

7.0 Role of General Practitioners, Specialists and other Health Professionals

"CFS is a sufficient indignity by itself; do not compound it. It takes considerable time and infinite patience to take an accurate history from a frail patient with impaired memory and concentration, especially if that history is long and complex. Resist the temptation of hurried, superficial evaluation. This is no illness for cookbook doctors. It is a disease for medical intellectuals with supple and open minds." - Thomas English MD. JAMA, Feb. 27 1991, 265, No.8.
"It is important to believe the child and listen to their views. Failure to do so can produce an angry, confused, uncooperative child who loses all trust in the medical and school authorities." - Alan Franklin, FRCP. BCH, Consultant Paediatrician. - ME/CFS U.K. Task Force, 1993.
7.1 Further to issues outlined in Section 6, a team approach to the management of ME/CFS patients appears to be the most effective. The GP has a vital role in coordinating care, including specialists and community agencies.
7.2 Despite limitations in being able to help, it is essential to recognise the value to the patient of honest, non-judgemental compassionate care.
7.3 Doctors and health professionals have a responsibility to:

• ensure accurate documentation and long term monitoring
• have a commitment to long term care
  
• update knowledge as research advances.
  

"The G.P. told me it was just my perception. I was actually one hundred percent well and didn't realise it. The fact that I couldn't stand to shave, almost fainted with any exertion and my blood pressure was 80/50 didn't bother him."
"Our doctors and family knew that we were sick but when no easy answer could be found they covered their ignorance by blaming us, telling us we were crazy." - Heather Frese, speaking on behalf of young adults to CFS Coordinating Committee, US, April 1996.
"My doctor is a source not only of information and treatments but also support: he is happy to hear about new research into CFS, good books on the subject and other people's experience of particular treatments. It is always heartening to see him and experience his enthusiasm to find a medicine or supplement that will help me."
"I've had to use a wheel chair for the last five years and we just now have got a stair lift so I can get to the rest of the house. Our doctor's relentless search for information and treatments keeps us all encouraged." - Quotes from patients with ME/CFS.

8.0 Needs of Special Subgroups - Children and Adolescents

"CFS is a devastating illness in children; even worse than in adults. Young children with severe diseases such as leukemia are able to come to terms with their illness because it is clearly defined. It is rare that CFS is defined for the child. With the constant denial imposed upon the child and the assumption that the symptoms are imaginary, only confusion can result, a confusion that may colour judgement and settings for the next 50 years. The child NEVER understands the concept of normal health." - Dr David Bell, Harvard Paediatrician, author of "A Doctors Guide to CFS"
"Their formative years are ravaged by illness. Any academic progress is achieved through effort and sacrifice unimaginable in most teenagers. For those ill in earliest years, good health was just an idea, an elusive abstraction that had been denied them, something difficult to describe having long ago lost their memory of it." - Hillary Johnson, Osler's Web 1996.
"Having diagnosed ME, how do we treat it and how is it managed? Dr Franklin then gave some tragic examples of how cases should not be managed, telling how a child with ME was left alone in hospital on the premise that "hysterics" never harm themselves; the girl fell out of bed; she cut her lip and was badly bruised; she also fractured her skull, yet she was still deemed hysterical by the staff. After about a year, this girl recovered sufficiently to be able to return to school, but there were horrendous residual psychological problems." - Alan Franklin, FRCP BCH, from Post. Grad. Address, Coventry 1995.
"But what we can't lose sight of is that these children are sick - often too sick to care who is around - and certainly too sick to cope with a school environment, which is possibly one of the noisiest and most physically active, user unfriendly environments you could find, particularly at break time, which is presumably when socialising would take place ... We must take the pressure off and give them and their parents 'permission' to put school on hold, until they are ready to return." - Amanda Hoy, Social Worker, Address to Canberra ME/CFS, Symposium 1991.
"You can always make up for missed school work but you can't make up for a lost childhood." - School Principal (retired).
"If you disbelieve a mother you do so at your peril and the peril of their child. They're very acute observers." - Professor Beveredge, SMH, July, 1994.
"It was only when I began to improve that I realised it was not normal for my legs to shake and tremble and it was not normal to feel nauseated after ten mouthfuls of food, nor was it normal to wake in the morning so unrested that I may as well never have been to sleep at all." - Adolescent with ME/CFS.
8.1 Children and adolescents with ME/CFS are a particularly vulnerable group. There are only a few studies on this group. David Bell MD. And Alan Franklin, FRCP have provided some sound advice for parents, doctors and teachers. The lack of research into this group is surprising, given the large number of young ME/CFS patients whose condition is deteriorating.
8.2 In addressing the needs and rights of children and adolescents with ME/CFS there are certain specifics to be acknowledged, including recognition of:

• the obstacle to reliable history documentation where the young person has lost his/her reference to NORMAL health, due to a gradual onset of symptoms and adaptation to a contracting state of health. These young people are most at risk of inappropriate labelling (lazy, shirker) and misdiagnosis (school phobia, depression, anorexia nervosa).
  
• the great importance, therefore, of parental observation and input to history taking for accuracy.
  
• the fact that young people often struggle to hide their illness in an effort to appear normal.
  
• the difficulty of diagnosing ME/CFS in children.
  
• the potential for serious damage to the developing self-image when a young person is confronted by ridicule, disbelief and mistrust by doctors, schools and peers.

Dr Alan Franklin, a member of the ME/CFS UK Task Force, has described the consequences of disbelief and emotional, verbal and even physical abuse by medical and health professionals. Franklin highlighted the fact that impaired/deteriorating central nervous system functions are more apparent when new learning in required.

• the serious impact of deteriorating cognitive function upon the education of young people where all work is new learning and/or involves memory. Tasks involving new learning are more sensitive to impaired central nervous function than well practised skills, which are the least vulnerable.
  
• the fact that education can, at least, be seriously disrupted; at worst, young people with ME/CFS may need to abandon education in any formal sense.
  
• some students are assisted by distance education, or home schooling which reduces travelling and assists working at the students pace.
  
• the right to be believed and trusted.
  
• the right to decline treatment eg. enforced exercise.

8.3 Children and adolescents have specific needs and rights which are not always respected in the busy environment of a doctor's surgery, including:

• need for advice regarding treatment, life-style, education, employment
  
• need for support and advocacy within the systems of education, law and justice, health, care and protection.
  
• need for support structures as provided for groups of children and adolescents with other illnesses, eg. diabetes, cancer, cerebral palsy, spina bifida and cystic fibrosis.
  
• need for acceptance as a person of worth, despite illness.
  
• need for valuing of the parent-child relationship and the utilisation of this relationship in the child's interest.
  
• the right to be involved in decisions regarding treatment/management.

"It's hard being tired, trying to assert your individuality while so terribly dependent on people for practical care. Of prime importance to adolescents is the need to feel accepted, normal, 'one of the pack'. This is nigh impossible to achieve when you mysteriously disappear everyday after recess, receive extensions on assignments and have to decline invitations to most parties, sporting activities!!"
"As symptoms continued and normal life faded away, the Infectious Diseases specialist mentioned high Epstein Barr antibodies and insisted that I had a viral infection - he could not name or clarify it further. The psychologist told my parents she found it hard to believe that neither set of grandparents or my parents were divorced, that I was an A student and active in many areas. She labelled me as 'school phobic' - a term I couldn't rationalise while I was too sick in the summer to enjoy our holiday at the beach."
A young boy labelled as school phobic protested: "But I want to go to school Mum, so I can hate it like everybody else."
"All the normal adolescent turmoil is experienced and perhaps magnified without resolution, for how do we assert our individuality if not through experiencing life and interacting with a whole variety of human beings."
"When I was young I had the whole first half of my life planned out: do a university degree, live an independent existence in my own flat, get a good job I enjoyed. Being greatly self reliant was a definite goal... Now this feeling leads me to not wanting any more birthdays until I recover - every birthday is a milestone of what hasn't happened; what I haven't achieved; how far behind I am in comparison with others my age."
Quotes from young people with ME/CFS.
Dr David Bell who has worked closely with children with ME/CFS states "these children face an additional burden caused by the disruption of normal developmental processes. The tragedy of this developmental disability is that it is imposed on the child by the physicians, well-meaning parents, and the community, all of whom are requiring proof of illness".

Continue to section 9

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