Pervasive Refusal Syndrome

Pervasive Refusal Syndrome (PRS, or Pervasive School Refusal Syndrome) is not a recognized mental illness or mental health condition and not included in the standard psychiatric classification systems.

UK charity Invest in ME Research reports that "Where there are some doctors who do not believe in ME as a diagnosis or do not accept that children with ME can be so seriously ill that they need tube feeding then flawed diagnoses are introduced such as Pervasive Refusal Syndrome."

PRS and Chronic Fatigue Syndrome controversy
A number of children initially diagnosed with chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME), or presenting with CFS symptoms, have later found themselves illness labeled as having PRS instead. One case study of such children was co-authored by controversial pediatrician Esther Crawley, and concluded:

"Clinicians should think about PRS in patients with refusal symptoms affecting, eating, social interaction, self-care, mobility and treatment. Patients have extremely high levels of fatigue and/or disability. Postexertional fatigue and disrupted sleep occur but patients are less likely to have characteristic symptoms of CFS/ME such as unrefreshing sleep. The diagnosis of PRS is important as the treatment is different."

Talks and interviews

 * Jan 7, 2014 Interview with Dr. Nigel Speight (paediatrician) - Interview met Dr. Nigel Speight (kinderarts)

https://www.youtube.com/watch?v=XcRZo1vO53c


 * In this web seminar the English paediatrician Dr. Nigel Speight is being interviewed by Rob Wijbenga, chairman of the Dutch ME/cvs Association and coordinator of the project 'Wetenschap voor Patiënten' or in English 'Science to Patients'. Dr. Nigel Speight has been involved in 30 child protection cases where children with ME have been threatened by removal from their families by social services. In this interview he talks about this cases and the situation with regard to children with ME in Great Brittain.


 * Jan 15, 2014, Media:VIDEO: Dr. Nigel Speight Speaks on Child Abuse by Medical Professionals


 * "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 [returned] to their families, and won 28 of those battles."

Evidence
A letter from a mother written in 2003 describes her severely ill son's experience as an in-patient in hospital, including needing a feeding tube regularly re-inserted, stomach surgery (as a result of him bleeding from the stomach), a plan for activity that would cause him considerable pain, possibly to the point of screaming, who later found her son's medical records stated he had "elective mutism" and "pervasive refusal syndrome" - information not shared with her at the time. According to the letter, the clinicians involved in advising the hospital were psychiatrist Simon Wessely and psychologist Trudie Chalder.

Notable publications

 * 2014, G160(P) Case series of Pervasive Refusal Syndrome presenting Chronic Fatigue: avoiding the pitfall of a wrong diagnosis (Full text)


 * 2009, Pervasive refusal syndrome as part of the refusal–withdrawal–regression spectrum: critical review of the literature illustrated by a case report (Full text)

Learn more

 * Children with ME - File on 4, Radio 4 (transcript)