Last year, Karina Hansen, a young woman with ME, was forcibly taken from her home in Denmark and placed in a psych ward on the grounds that her illness was psychological. This is neither an isolated occurrence, nor is it confined to a particular country or region. 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. In 2005, Sophia died.
This interview with British pediatrician Dr. Nigel Speight was conducted as part of the Dutch ME/CFS Association’s project Wetenschap voor Patiënten (Science to Patients). Dr. Speight talks about other cases in which young patients with ME/CFS have been taken from their families. In some of these cases mothers have been accused of making their children ill (Munchhausen by Proxy). In others the children have been diagnosed with “Pervasive Refusal Syndrome.”
Dr. Speight’s experience with state agencies is extensive. He has fought to have 30 children with ME resturned to their families, and won 28 of those battles.
Who is at fault?
According to Dr. Speight, the entire system is at fault for abusing children with ME. But in Dr. Speight’s eyes, medical professionals, who are supposed to protect their patients, must take the lion’s share of the blame.
“It is easy to blame social workers … but I think we have to blame the medical profession first. It is the medical profession’s duty to be able to make a clear diagnosis of ME/CFS. If they did that there would be protection. But many of the cases I have seen have not been diagnosed. Doctors have to get it right to start with.”
Once someone pulls the trigger to set child protection proceedings in motion it is like a juggernaut … it is very difficult to reverse. The further the proceedings go the more the professionals dig in. They cannot afford to lose face, or admit they were wrong. There is an almost sadistic element in the worst cases.”
In answer to the question of whether Dr. Speight sees any change of attitude at all, he said, “I sometimes feel things are getting worse… We need something dramatic to happen.”
One possibility is that “families take legal proceedings against the professionals and begin to counterattack.”