by Christine Hunter
Alison became suddenly ill in 1986 with a high fever, brutal headache and a disturbing myriad of other symptoms. We had no conception of what lay ahead. As the weeks and months passed under “house arrest”, the diagnosis of post viral syndrome offered little comfort – no treatment, no release date. Alison endured 10 years of devastating symptoms with short periods of remission. In 1994 she wrote “I can cope as long as I have hope. I need to feel that my doctors are actively pursuing avenues of help. I have far too much to do to simply defer to Time and Mother Nature”.
“FORGET ME NOT” was written when Alison had struggled to resume high school attendance for a couple of subjects. Further infection and severe throat ulceration led to a devastating relapse. In Alison’s last six months under palliative care she was examining her options to study medicine so that she could work in Africa. She insisted that should she die an autopsy must be done “to find out why my body let me down so badly”.
Our precious girl, so kind and thoughtful and with a strong sense of justice, so frequently bore the brunt of ignorance and cruel misjudgements which left her utterly crushed. Our helplessness in the face of her terrible suffering still haunts us. The consolation that everything possible was done is not available to us. Alison died in 1996. The autopsy studies begun in 2010 have now been published.
The volumes of medical notes collected from all Alison’s hospital admissions make painful reading. Of the many false attributions she endured, several were particularly distressing. Venepuncture marks around her ankle were recorded as “IV drug abuse to be sought with persistence”. No questions were asked, yet a call to Hanly Moir or her GP would have quickly clarified that the staff found great difficulty in taking her blood and constantly apologised to Alison. Her rigid neck which doctors were unable to bend with force became “functional” . When episodes of transient paralysis reported previously intensified to bulbar palsy, impaired gag reflex and paralysis of arms and legs, it became “non organic”. To her utter despair the more ill she became the more psychiatric intervention was encouraged. In the last months of her life, it was felt that Alison’s symptoms , particularly the ulcerations, could allow classification and treatment as for Behcets Disease. This diagnosis, instead of chronic fatigue syndrome, validated her perilous situation. In place of scorn and dismissal, she was treated with the warmest respect and care by all the staff. She was the just same intelligent lovely person, the only thing that changed was the name given to her disease.
Myalgic encephalomyelitis is the name now accepted by peak bodies CDC, WHO, IACFS/ME, UK CFS/ME Collaborative, ME Research UK and preferred by advocacy groups.
The Alison Hunter Memorial Foundation ceased operation as an institution in 2014, and is now in partnership with the National Centre for Neuroimmunology and Emerging Diseases (NCNED), Menzies Health Institute Queensland, Griffith University.