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[edit | edit source]
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[edit | edit source]
- Jan 7, 2014 Interview with Dr. Nigel Speight (paediatrician) - Interview met Dr. Nigel Speight (kinderarts)
- 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.
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 of mistreatment and medical neglect[edit | edit source]
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.
PRS used to justify existing political policies[edit | edit source]
Bodegård (2014) describes how large numbers of children from families claiming asylum were found to have pervasive refusal syndrome, and an unethical study by the Swedish government ministry for asylum and refugees concluded that the illness may be malingered or provide secondary gain by allowing asylum-seeking families to obtain residence in Sweden for the treatment of their ill child. Bodegård reports the study ignored the childrens' current living conditions and possible prior traumatic experiences, despite that many were seeking refuge after war, and used pervasive refusal syndrome to justify the mass deportation of families and their seriously ill children. Sweden later used new medical evidence to re-classify PRS as a form of depression.
Notable articles[edit | edit source]
- KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING - Preventing the unnecessary forced mental health sectioning of severely ill patients - The Grace Charity for M.E. with 25% ME Group
Notable publications[edit | edit source]
- 2014, Comment on the paper “Pervasive Refusal Syndrome (PRS) 21 years on—a reconceptualization and renaming” by Ken Nunn, Bryan Lask and Isabel Owen(Full text)
- 2014, Pervasive refusal syndrome (PRS) 21 years on: a re-conceptualisation and a renaming(Abstract)
- 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)
See also[edit | edit source]
- Biopsychosocial model
- Ethical issues
- Karina Hansen
- Pediatric ME/CFS
- Severe and very severe ME
- Sick and Tired BBC
- Sophia Mirza
- Tymes Trust
Learn more[edit | edit source]
- Children with ME - File on 4, Radio 4 (transcript)
References[edit | edit source]
- Jaspers, Tine; Hanssen, G. M. J.; van der Valk, Judith A.; Hanekom, Johann H.; van Well, Gijs Th. J.; Schieveld, Jan N. M. (Nov 2009). "Pervasive refusal syndrome as part of the refusal–withdrawal–regression spectrum: critical review of the literature illustrated by a case report". European Child & Adolescent Psychiatry. 18 (11): 645–651. doi:10.1007/s00787-009-0027-6. ISSN 1018-8827. PMC . PMID 19458987.
- Invest in ME Research (2006). "The Elephant in the Room - The General Medical Council - Dr Nigel Speight". www.investinme.org. Retrieved Feb 15, 2019.
- Marshall, Eileen; Williams, Margaret (Jun 16, 2006). "INQUEST IMPLICATIONS?" (PDF). Retrieved Feb 15, 2019.
- Herberholz, N.; Collin, S.; McCowat, A.; Crawley, E. (Apr 1, 2014). "G160(P) Case series of Pervasive Refusal Syndrome presenting with Chronic Fatigue Syndrome: avoiding the pitfall of a wrong diagnosis" (PDF). Archives of Disease in Childhood. 99 (Suppl 1): A70–A70. doi:10.1136/archdischild-2014-306237.168. ISSN 0003-9888.
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
- Speight, Nigel (2014). "28. Interview with Dr. Nigel Speight (paediatrician) - Interview met Dr. Nigel Speight (kinderarts)". YouTube. Wetenschap voor Patienten - ME/cvs Vereniging.
- January 15, ProHealth com •; 2014 (Jan 15, 2014). "VIDEO: Dr. Nigel Speight Speaks on Child Abuse by Medical Professionals". Prohealth. Retrieved Feb 15, 2019.
- Bodegård, Göran (Mar 1, 2014). "Comment on the paper "Pervasive Refusal Syndrome (PRS) 21 years on—a reconceptualization and renaming" by Ken Nunn, Bryan Lask and Isabel Owen". European Child & Adolescent Psychiatry. 23 (3): 179–181. doi:10.1007/s00787-013-0435-5. ISSN 1435-165X.
- The Grace Charity for M.E.; 25% ME Group (Jan 2019). "KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING". Retrieved Jul 12, 2019.
- Nunn, Kenneth P.; Lask, Bryan; Owen, Isabel (Mar 2014). "Pervasive refusal syndrome (PRS) 21 years on: a re-conceptualisation and a renaming". European Child & Adolescent Psychiatry. 23 (3): 163–172. doi:10.1007/s00787-013-0433-7. ISSN 1435-165X. PMID 23793559.
chronic fatigue syndrome (CFS) - A controversial term, invented by the U.S. Centers for Disease Control, that generally refers to a collection of symptoms as “fatigue”. There have been multiple attempts to come up with a set of diagnostic criteria to define this term, but few of those diagnostic criteria are currently in use. Previous attempts to define this term include the Fukuda criteria and the Oxford criteria. Some view the term as a useful diagnostic category for people with long-term fatigue of unexplained origin. Others view the term as a derogatory term borne out of animus towards patients. Some view the term as a synonym of myalgic encephalomyelitis, while others view myalgic encephalomyelitis as a distinct disease.
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.