A YOUNG woman in Henty described as a dynamo in all areas of life has gone missing.
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When you do a blood test, everything's normal - but they can't get out of bed. It's something that people don't understand, even the medical world I don't think really understand it
- Alison Campbell
Maybe not literally, but effectively as Ainslie Campbell, 29, is housebound and bedridden, needing assistance with daily functions.
Myalgic encephalomyelitis, also known as chronic fatigue syndrome, has completely derailed the health of the veterinarian and keen netballer.
Ainslie and her family, parents Alison and Peter and partner Tim Carkeek, hope Sunday’s free film in Henty will increase awareness of a misunderstood condition.
ME/CFS is a complex, chronic neuro-immune illness difficult to diagnose and treat.
Ainslie contracted, and thought she had recovered from, glandular fever about six years ago, but severe symptoms re-emerged.
Mrs Campbell said her daughter required “all day, every day” care.
“She’s just slowly declined and this has become the norm since about April,” she said. “When you do a blood test, everything’s normal – but they can’t get out of bed.
“It’s something that people don’t understand, even the medical world I don’t think really understand it.”
Family friend Cindy Scott said it was devastating to see the impact of the condition on such a bright and bubbly personality.
“Where there was once a sharp intelligence, she now simply cannot think,” she said.
“Sleep is a symptom and not restorative; it is often disturbed and she wakes feeling no better than she did beforehand.”
Other issues included hypersensitivity to light and noise, muscle pain, problems regulating her body temperature, persistent cold sores and symptoms of irritable bowel syndrome that aren’t relieved by special diets.
Sunday’s film, Unrest, outlines the story of Harvard PhD student Jennifer Brea as ME/CFS impacts her life.
Member for Albury Greg Aplin, who planned to attend the Henty screening, spoke about Ainslie’s situation in the NSW Parliament.
Mr Aplin said he had witnessed the damage wrought by the condition and additional harm caused by those who regarded it as “all in the mind”.
“This is a one-two hit that delivers an almighty blow to sufferers, their families and friends, who know the hard truth and who live with this dark shadow day by day,” he said.
Mrs Campbell said Ainslie was too ill to receive visitors or respond to messages but people could help by encouraging awareness, research and funding into ME/CFS.
“It seems to me there is no known medical pathway to getting better,” she said.
“Find out why it happens, there must be a metabolic reason, and go from there.”
- Unrest can be seen at Henty Community Club, South Street, Henty, on Sunday at 4pm