2001 Clinical and Scientific Meeting

A Medical Nightmare–A Family's Story of CFS

Our daughter Emily was a healthy, happy, outgoing teenager, a high achiever academically and a keen sportsperson, prior to contracting glandular fever. Post-viral symptoms lingered for over a year and, following influenza, her condition deteriorated markedly and her symptoms increased. She spent approximately 10 months in two hospitals over a period of 15 months. Diagnosis for two years was given as "CFS/Post-viral Syndrome" although we discovered, from hospital notes, that a primary diagnosis by a psychiatrist 2 weeks after initial admission was "Pervasive Refusal Syndrome". Emily began an intensive rehabilitation program alongside patients suffering from Anorexia Nervosa. When she failed to respond according to the expectations of medical staff, due to the severity and debilitating nature of her symptoms, she was subjected to humiliation and intimidation.

Thus began our family's nightmare. It was frustrating and distressing to have Emily's symptoms constantly invalidated and to have it suggested that she was not suffering a "real illness". Being too sick to speak up for herself, our daughter requested that we advocate for her. This was interpreted as the parents "undermining the hospital". The rehabilitation program resulted in alarming deterioration in her condition, and this led to a transfer to the second hospital for a specialist opinion. The diagnosis of CFS was confirmed, the rehabilitation program recommenced and more invalidating treatment followed. When we voiced our deep concern and challenged the form of treatment, we were accused of "promoting invalidism". After eventual discharge, treatment was continued at home under another doctor, who was both supportive and had some measure of success with his treatment. We also employed a physiotherapist to regularly assess our daughter and assist with a suitable exercise program and stayed in contact with the hospital specialist. We requested discharge from the hospital specialist's care so that we could move on from repeated hospital admission, with subsequent deterioration in Emily's condition. This request was not granted but was followed by harassment to readmit our daughter to hospital, threats and sudden change of diagnosis to Psychosomatic Disorder. The threats were carried out with notification to, and involvement of, a government child welfare department. The suggestion was that, in the light of the specialist's report, we were not suitably caring for Emily and she could be removed from our care. This trauma inflicted on our daughter, on top of a severe and prolonged illness, and the added stress on all the family is nothing short of a gross abuse by the medical profession.

 

Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285

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