The ME community is rallying around 17-year-old Jehan “Gigi” who has been hospitalized with severe myalgic encephalomyelitis (ME) in the UK, and is now being threatened with being sectioned – forced institutionalization – against her will to a psychiatric hospital for her inability to eat, speak or walk due to the effects of severe ME against her will.
Gigi’s doctor has dismissed her symptoms of severe ME and has, instead, diagnosed her with Pervasive Refusal Syndrome, meaning that she is either consciously, or subconsciously withdrawing from the world because of some trauma, real or imagined. Pervasive Refusal Syndrome is not a formally recognised mental illness and has no empirical basis or agreed-upon treatment. The doctor has told Gigi’s family to stop “colluding” with their daughter. ME, meanwhile, has been recognised by the World Health Organisation (WHO) as a neurological disease since 1969.
The horror of Gigi’s situation is not an isolated incident as dozens of children with severe ME have been threatened with being sectioned in the UK and throughout Europe for being unable to snap out of their debilitating illness.
“Gigi is now desperate to come home,” writes her mother on the GoFundMe page she set up for Gigi. “We, her family, are desperate to have her home. We believe Gigi can best recover in the bosom of her family and not in a hospital ward, or God forbid, a psychiatric unit.”
Gigi has been hospitalized for nearly four months. She has recovered her body-weight, but is still being fed by tube, is unable to move, or care for herself and still cannot talk. The family has launched a GoFundME to raise funds for legal assistance to bring Gigi home where the family can care for her.
Gigi’s mother is herself a Clinical Psychologist, with over 20 years’ experience of working with children. Despite this, medical staff have refused to accept her mother’s personal and professional opinion regarding the cause of Gigi’s illness. They continue to insist that it has a psychological basis.
(The family has indicated that in the event that they don’t need the donated funds, either for legal representation or home care, they will donate everything to an ME research charity.)
History of sectioning children with severe ME
In 2013, 24-year-old Karina Hansen was forcibly removed from her home in Denmark for declining to follow the orders of a doctor who had recommended graded exercise therapy, which had worsened her. Karina spent three-and-a-half-years detained at a psychiatric ward where her treatment further worsened her. After a five-year legal battle and ongoing support from the ME community, Karina was finally freed from state guardianship in 2018.
In 2003, Sophia Mirza, a British woman with severe ME, was removed from her home and placed in a mental hospital, where her condition worsened. Sophia died in 2005, and an independent neuropathologist found Sophia’s spine contained massive infection.
British pediatrician, Dr. Nigel Speight, has personally been involved in defending 28 cases in which adolescents were threatened with being sectioned due to severe ME, as health officials viewed their disease as a psychiatric issue they could overcome with talk therapy and exercise.
Gigi’s mother, Dionne, writes about how her daughter developed severe ME:
Jehan has just turned 17 and has been on the Children’s Ward in our local hospital for over 15 weeks, with severe ME, also known as Chronic Fatigue Syndrome (CFS), or Post-Viral Fatigue Syndrome.
M.E. is not just ‘feeling tired’. In its severe form, which Gigi has, people can’t do any activity for themselves.
Just after Christmas 2017, Gigi got the flu. This was just your everyday flu and we thought she would shake it off. But she didn’t. Instead, she began complaining of feeling tired and over the next 10 months, her condition got worse and worse. Eventually, she couldn’t do anything for herself. She couldn’t come downstairs, she couldn’t wash or dress herself, she couldn’t attend school and she couldn’t play with her dog, Chally. She eventually became too tired even to eat or drink and she stopped talking.
After 10 months of trying to persuade medics that Gigi was ill, and that it wasn’t “all in her mind”, she was eventually admitted to hospital with a body-weight so low we were told she was “at risk of death”. In order to save her life, she was fitted with a naso-gastric (NG tube).
Gigi has been in hospital for nearly four months. She has recovered her body-weight, but is still being fed by tube, is unable to move, or care for herself and still cannot talk. The very NHS, who for months would not help us, are now making it difficult for Gigi to return home and are talking about sending her to an adolescent psychiatric unit! We have fully cooperated with the hospital and have been trained in how to carry out Gigi’s personal care and to manage her NG tube feeding.
We are asking for your help, because we may need to fight a legal battle to get Gigi back home with her brothers and the rest of the family. We want to have legal representation so that Gigi has someone who can ‘speak’ out for her, who knows the law in this area.
Prior to falling ill, Gigi was a vibrant and active teenager. She had ambitions to be a writer and at just 14, had created her own website and had stories for sale on iTunes. When the M.E struck, Gigi had nearly completed her first book. She was also teaching herself Norweigan, because she had a dream to live in a house by a fjord and be a writer (she had actually started saving up for it!).
Gigi is now desperate to come home. We, her family, are desperate to have her home, and Chally, misses her too! We believe Gigi can best recover in the bosom of her family and not in a hospital ward, or God forbid, a psychiatric unit. Please help us get Gigi home, so she can play with her dog, argue with her big brother about emptying the dishwasher and try to recover her life. I’m dreaming that one day she will be able to buy her house on a fjord in Norway and finish her novel!