1. Factitious Disorder and CFS in Adolescents David S. Bell MD, FAAP Associate Clinical Professor of Pediatrics State University of New York at Buffalo January 12, 2007

2. Case Presentation  16 year old girl, acute mononucleosis  2 weeks out of school with physician’s note  Did not recover;  Persistent fatigue, headaches, sore throat, myalgia, joint pains, nausea  Bedridden 6 Months  No Specific Diagnosis  Referral to Social Services because of school truancy

3. Case Presentation - 2  Failure to attend school considered educational neglect.  Educational neglect considered child abuse  Court action begun to remove child from family as a treatment for neglect (“parent-ectomy”)  School refused any educational support at home because no medical diagnosis

4. Case Presentation - 3  Psychosocial evaluation revealed healthy, “intact” family, both parents were PhD’s.  No substance abuse, adolescent was A student, no history of neglect or abuse.  Case continued 1 year, $20,000 spent in legal fees  No education offered during this time.

5. ME/CFS in Children and Adolescents Jason L, Porter N, Shelleby E, et al. A case definition for children with myalgic encephalomyelitis/chronic fatigue syndrome. Clinical Medicine: Pediatrics 2008;1:1-5.

6. Adolescent CFS 1. Unexplained, persistent or relapsing chronic fatigue over the past 3 months that was not the result of ongoing exertion and was not substantially alleviated by rest. 2. Substantial reduction in previous levels of social, educational, and personal activities. 3. Specific symptoms within the five classic symptom categories, which have persisted or recurred during the past 3 months of illness, but may predate the reported onset of fatigue

7. Five Symptom Categories 1. Post-exertional malaise with loss of physical or mental stamina, rapid muscle or cognitive fatigability. 2. Unrefreshing sleep; disturbance of quantity and/or rhythm 3. Myofascial pain, joint pain, abdominal and/or head pain 4. Two or more neurocognitive manifestations 5. At least one symptom from two of three subcategories: Autonomic manifestations Neuroendocrine manifestations Immune manifestations

8. Somatoform Disorders Somatization Disorder Conversion Disorder Pain Disorder Hypochondriasis Body Dysmorphic Disorder Malingering Dissociative Disorders Factitious Disorder –Munchausen’s Syndrome

9. Both Factitious Disorder and Malingering "they are not so much interested in treatment as they are in either seeking to ‘enjoy’ the status of ‘patient’ or in obtaining a medical diagnosis for personal gain." Branch, WT. Office Practice of Medicine, Saunders; 4 th ed; p1219

10. Munchausen’s by Proxy 1.Illness in a child that is simulated or produced by a parent or someone acting in loco parentis. 2.Presentation of the child for medical assessment and care, usually persistently, often resulting in multiple medical procedures 3.Denial of knowledge by the perpetrator as to the etiology of the child's illness 4.Abatement of the child's acute symptoms when the child is separated from the perpetrator. Excludes physical and sexual abuse and nonorganic failure to thrive. Shaw. Factitious disorder by Proxy; Harvard Rev Psychiatry 16, 215-223, 2008

11. Pediatric Condition Falsification (PCF) American Professional Society on the Abuse of Children  Diagnosis of PCF given to the child victim  Psychiatric Diagnosis of Factitious Disorder by Proxy (FDP) given to the perpetrator  Intentional falsification of symptoms by perpetrator (parent)  Ayoub. Definitional Issues in Munchausen’s syndrome by Proxy; 2003. Child Abuse Neglect 11:7-10

12. Hypochondriasis by Proxy Mild variants where maternal anxiety leads to an exaggerated perception of the child as sick. Roth. How “mild” is Munchausen’s syndrome by Proxy? Isr J Psychiat Relat Sci 1990;27:160-7

13. “The diagnosis of [Factitious Disorder by Proxy] can be ruled out in a child when the repeated and suspicious presentations for medical care are found to result from illness that is wholely and credibly accounted for in another way.” Shaw. Harv Rev Psychiatry.2008. p218

14. Case Presentation #2  16 year old girl, acute mononucleosis  2 weeks out of school with physician’s note  Did not recover;  Persistent fatigue, headaches, sore throat, myalgia, joint pains, nausea  Bedridden 6 Months  No Specific Diagnosis  Referral to Social Services because of school truancy

15. Case Presentation #2  Same chain of events, except:  Case #1 occurred in 1986, Case #2 occurred in 2009  Case #2 cost family $120,000 to maintain legal custody of their child

16. Summary 1.CFS is a diagnosis that would specifically exclude PCF (FDP) 2.This information has not been distributed to pediatricians, child abuse agencies, and educators. 3.Medical abuse continues at this time, causing serious educational, financial and social hardship

17. Action Points 1.CDC and HRSA, should draft a document stating that CFS is a serious medical condition and is recognized by legal authorities, and is not caused by child abuse or neglect. 2.CDC and HRSA should notify public and private educational facilities concerning the existence, prevalence, and symptoms of CFS. 3.CDC and HRSA should insist upon educational support of an ill adolescent.

18. Action Points 4. A clinical diagnosis (not research diagnosis) of CFS be able to exclude PCF (FDP) unless proof of abuse is also found (in which case CFS and abuse are co-existing conditions) 5. CDC should attempt to educate physicians concerning the differences between CFS and PCF 6. Engage the American Academy of Pediatrics to contribute to diagnostic criteria and formulation of policies