Myalgic encephalomyelitis, or ME, is little understood by the general public. That lands some parents in the firing line.
Angus Rodwell was an energetic, playful child from Suffolk, UK. Then, at the age of eight, he fell ill with a series of viral infections. Five years on, the 14-year-old is now mostly bed-bound due to myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome), a poorly understood neurological condition.
His many symptoms include extreme exhaustion, migraine headaches, and pain. He is sometimes too weak to walk. He suffers from what doctors call “crashes,” where his symptoms intensify if he does too much activity. Sometimes, these can be triggered by something as minor as getting dressed.
Angus was diagnosed in 2013. His 55-year-old mother Tina, who quit her job to be her son’s full-time carer, says that, instead of offering help, his doctors have threatened to take Angus into social care. Tina says that some medical professionals even believe that she is fabricating his illness, and that she was also pressured into allowing him to have treatments that made him worse.
There are an estimated 250,000 people with ME in the UK, 25,000 of whom are believed to be children, although this number could be higher due to the fact that many cases are believed to be misdiagnosed or undiagnosed.
Around 25 percent of those with ME are severely affected and require full-time care. Some of these people are bed-bound, tube-fed, and are unable to tolerate light, sound, or touch.
One sufferer likened the condition to being “locked in a prison,” and a 2015 Danish study found those with ME report a worse quality of life than people with lung cancer, heart disease, and chronic kidney failure.
Two young women in the UK – Sophie Mirza and Merryn Crofts – have had coroners record their condition as their cause of death. Both of their autopsies recorded dorsal root ganglionitis – inflammation of nerve roots around the spinal cord – suggesting a catastrophic infection.
Instead of getting the help they need, many people with ME, such as Angus Rodwell, are disbelieved. They are told they have a psychological – not physical – illness and are accused of faking.
In a recent UK parliamentary debate on ME, Scottish National Party (SNP) Member of Parliament Carol Monaghan revealed that one in five children with the disease are investigated by social services, with some even being forcibly placed in a hospital or foster homes with destructive effects on their health.
|“If doctors don’t get it right, then the other people involved in child protection, such as teachers concerned about a child missing school, also get it wrong, and you end up with this nightmare for the families.”
Dr Nigel Speight, Hon. Paediatric Medical Adviser, ME Association.
This is approaching a “national scandal,” according to Dr. Nigel Speight, a pediatrician from the North East of England who specializes in ME.
Throughout his 30-year career, he has helped large numbers of families fight child protection cases where children with the condition have been at risk of removal from their parents.
He says that anyone – including the child’s doctor, their teacher, and even a neighbor or relative – can get social services involved, and the decision to take a family to court often rests with people who have never even met the children.
“It’s a problem that has been getting worse in recent years,” Speight tells Broadly.
“If doctors don’t get it right, then the other people involved in child protection, such as teachers concerned about a child missing school, also get it wrong, and you end up with this nightmare for the families.”
He adds that while he may have an “unduly pessimistic view” of the situation due to his involvement in many of the worst cases around the UK, these may be the tip of the iceberg.
For every family who have involvement with social services, he says, there are many others subjected to “disbelief and pressure, especially around school attendance.”
One of the problems with diagnosing ME is that it doesn’t show up on blood tests, or other investigations such as an MRI scan, says Mary-Jane Willows, the Head of Child Services at the charity Action for ME. “Many of the other conditions affecting children, such as childhood cancer or epilepsy, you can prove. But the children I see have a real, serious illness.”
ME often starts after a viral infection (such as glandular fever), but there may also be a familial link.
|“Many doctors these days don't take proper case histories. They are focused on ordering tests – but you can diagnose ME in an hour if you properly investigate the patient's history.”
“Either through ignorance or wilful avoidance, many doctors fail to make the diagnosis.”
Dr Nigel Speight, Hon. Medical Adviser, ME Association.
Despite the World Health Organization classifying ME as a neurological illness, one pervading view is that it is a psychiatric condition.
In 2011, a controversial large-scale trial of people thought to have ME, called PACE, was published in the Lancet medical journal. The trial compared standard medical care for ME to cognitive behavioral therapy (CBT) – a form of psychological treatment that aims to help people change their behaviors and reactions to a situation – and graded exercise therapy (GET), where physical activity is gradually increased. It found 30 per cent of patients recovered after undergoing GET, though this remains controversial among many ME sufferers and experts as the claims include extremely broad ranges for fatigue and physical function.
This trial dominates UK clinical policy, but there have been widespread reports of GET making those with ME worse, with patients beginning GET moderately affected and ending the therapy completely bed-bound with very little chance of recovery.
In 2015, UK charities including the ME Association gathered evidence from patients that indicated the vast majority of them have been made significantly worse by GET.
“In some cases of GET, children with ME are being told to increase their energy levels by 10 per cent a week – if I did this, I’d be an Olympic athlete,” Speight says.
He adds that when families complain that the child is being made more ill, they can be told to “push through the pain.”
|“One of the most heartbreaking cases I’ve dealt with was an eight-year-old girl who was forced to have GET,” he adds. “Her parents were told that if they didn’t comply, she'd be taken away [by social services].”
Dr Nigel Speight, Hon. Medical Adviser, ME Association.
“Her parents reluctantly allowed her to be admitted to hospital where she was given vigorous physiotherapy for several months. She was able to walk before being admitted, but after she deteriorated to the extent that she became bed-bound and needed to be fed via a tube.”
The girl – known publicly as “B” to preserve her privacy – is now 15, and her case was cited by Carol Monaghan during the parliamentary debate. She was allowed home but is now paralyzed and unable to feed or wash herself.
One of the characteristics of ME is post-exertional malaise. This is a worsening of symptoms that can occur after physical or mental exertion, and can strike as long as 48 hours after activity. If this keeps happening, the condition can become severe.
Tina Rodwell says that this is what her son experienced.
“Angus was sent for GET, where a physiotherapist made him stand up and down 20 times and catch a heavy ball,” she says. “He never recovered. After that, he started to suffer blackouts and couldn’t walk.”
|“Essentially, I was forced to abuse my child due to the threat of social services – it’s been horrifying.”
“All of the letters I received from his doctor focused on my behavior as a concerned mother and not Angus’s illness, and it terrified my son hearing doctors threaten me with child protection in front of him.”
Speight says single mothers in particular can be targeted by social services, partly due to the fact they are the primary caregiver, but also possibly because of sexism in the medical profession. It is common for women to be treated differently by doctors; they have to fight harder to get diagnoses and treatments for health conditions than men, and are more likely to be called “hysterical” or told they are simply stressed.
Child protection may get involved in a child’s ME case if it is believed that the caregiver suffers from fabricated or induced illness (FII). Once called Munchausen by Proxy, it occurs when a parent or carer – usually a biological mother – exaggerates their child’s symptoms. However, FII is extremely rare when compared to actual incidences of ME.
|“Often, this occurs because doctors don’t believe ME can be as severe as it is.”
“As they think GET and CBT should make the children better, when it inevitably doesn’t they then believe the parent – often the mother – is abusing their child.”
“And when parents complain about doctors making their children worse, this can attract negative attention from their local authorities.”
Dr Nigel Speight, Hon. Medical Adviser, ME Association.
Libby, a 38-year-old from South West England, was accused of FII by her local authority. Her youngest daughter Amy developed ME at the age of three following chickenpox and a chest infection – and the intense physiotherapy prescribed in the following years by her doctor made her worse. (Libby and Amy’s names have been changed at Libby’s request due to her fears of retribution from child protection.)
“She was on a flexible arrangement with her school as she was too ill to go there full-time, but our local authority tried to change it. Social services then became involved because I took them to court to prove Amy wasn’t well enough for school,” Libby recalls.
“Despite her having an official diagnosis, I was accused of fabricating her illness and we had to go through several tribunals so I could home-school her. It caused my family a lot of additional stress, grief and anger on top of dealing with Amy’s illness.”
Amy, now 11, can only do a maximum of an hour of activity per day.
“Half of the time, it’s too much for her to get washed or dressed. She can barely leave the house. We do sometimes get out to do something gentle like an art activity which she loves, but she struggles with this and it can wipe her out for days.”
For Tina, one of the hardest things has been seeing other parents she knows out and about with their children.
|“It breaks my heart that my son is stuck in his bed while the world goes on without him. All I want for him is to be able to return to a normal life – going to school, riding his bike again and being free. And it greatly upsets us both that he doesn’t feel believed that he’s so ill.”
“The system is completely broken,” says Willows from Action for ME. “In these cases, the parents—and children—feel they are guilty until proven innocent. Until it gets down to teachers, social services, some paediatricians and members of the public that these children are severely ill, things won’t change.”
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