Dr Nigel Speight is a pediatrician, now semi-retired, with a special interest in myalgic encephalomyelitis (ME). The following is an excerpt from an interview carried out by Rob Wijbenga, chairman of the Dutch ME/CFS Association. In it, Dr Speight describes how doctors’ inability to confidently recognize and diagnose ME/CFS can result in an alternate ‘explanation’ – that the child’s inability to carry out normal activities is the parents’ fault, with the consequences that children are forced into inappropriate therapies which harm them, and are even taken from their families. While this interview is ten years old, there is no reason to think this is not still happening now in the UK. The NICE guidelines were updated in 2021, but clinicians have not been informed of the new clinical standards. Mandatory training on ME/CFS for all UK doctors is urgently needed to prevent medical abuses like the ones that Dr Speight describes below.
A lot of it comes from a simple failure of doctors to protect patients by diagnosing them with ME/CFS.
This is a very painful area, it’s one of the most unpleasant things I’ve witnessed in my entire medical career. It’s something that I’ve seen all over the British Isles, I’ve had cases scattered throughout the map of Great Britain and they all seem to have similar causes, and a lot of it comes from a simple failure of doctors to protect patients by diagnosing them with ME/CFS, which then leaves them at risk of being persecuted for alternative explanations. I’ve had over 30 cases which have all resulted in child protection proceedings with case conferences being held, and a threat of removal. Fortunately most of them, we have managed to avert by early intervention and giving second opinions, but [in] quite a few [there] has actually been a real threat of removal, and one or two children have actually spent time away from their families, against their will, because of court proceedings.
There’s one [case] in the Midlands, we’ll call her Tiffany, it’s not her real name, for confidentiality, a lovely thirteen-year-old girl, lively, talented, musical, and she was in perfect health until she was struck down by quite acute onset ME at the age of thirteen, and she was so ill that her mother had to turn to hospital doctors for admission to hospital. And she did this openly and trustingly. And once in hospital she was under a pediatrician who believed in ME, and everything seemed alright.
But gradually the multidisciplinary team, including a child psychiatrist, an occupational therapist and a physiotherapist, took over the management of this case, and they set weekly meetings where the girl was set targets, where she had to reach these targets. And she’d be taken to these meetings in her wheelchair, with her head sagging, and have to sit through them, and agree to try and achieve the targets next week. She was in hospital for three months, she got steadily worse despite cooperation.
The nurses used to leave her food outside her reach so that she would have to fight to get to it, whenever her mother came in she found her demoralized and tearful.
The professionals couldn’t tolerate this failure to improve, and they blamed the mother. So the mother’s visiting was limited till six pm. So the physiotherapist had her all day long. The nurses used to leave her food outside her reach so that she would have to fight to get to it, whenever her mother came in she found her demoralized and tearful.
Subsequently, despite the mother’s visiting being limited, the child continued to get worse. The first pediatrician said you might as well take her home, and so the mother took her home. And then the family doctor came and subjected her to thirty-minute intense interviews to try to find out what her mental state was and why she was in this state. The girl was reluctant to keeping talking to this GP and he reduced her to tears, and the family doctor then informed social services that she couldn’t accept responsibility, and social workers came with police and removed this girl from her mother again, and then treated it as a case of Munchausen syndrome by proxy. The mother’s visiting was restricted to when there was a social worker present, and the plan was to remove her to foster care for six months. And [the aim was that] she would then get better because it was her mother that was making her ill.
I was called in by the independent social worker and met this girl totally demoralized, resigned to going into foster care, and I simply put in an opinion that their management of ME had no evidence to support it and that it wasn’t the mother’s fault, and fortunately we managed to get this girl discharged home, after which she made a slow but steady recovery, she’s now completed university. So that was a happy ending but a lot of unnecessary unhappiness along the way. And that was a reasonably typical case that went quite a long way along the line.
It wasn’t a case of pervasive refusal syndrome, she was cooperating, she was just very ill.
I had [another] case… this was again a girl of about thirteen or fourteen, in Scotland, and she was under the care of a pediatrician who diagnosed ME quite confidently, and she was moderate, moderately severe, but then she got more severe, and this is one of the risk factors, the severe case of ME is not tolerated by professionals. Her pediatrician lost her nerve and referred her to psychiatry, who made the alternative diagnosis, not of Munchausen syndrome by proxy this time, but of a thing called the pervasive refusal syndrome. It wasn’t a case of pervasive refusal syndrome, she was cooperating, she was just very ill, and by the time I was called in to intervene, I found her on a psychiatric ward curled up in the fetal position, being tube fed, and very, very sensitive to light and sound, and every time the nurses closed the door a shudder went through this girl’s body. But the psychiatrist would not allow her to have ear protectors because that would increase her sense of withdrawal, and the psychiatrist insisted on talking to her in a loud voice, and they thought this way they would cure her of her pervasive refusal syndrome. I’m glad to say the court order was reversed a week later and she was allowed to go to a gentle nursing home where she is being allowed to make a slow and gentle recovery.
The full interview: Interview with Dr. Nigel Speight (paediatrician).
ME/CFS Medical Education Campaign 