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January 2022

A PANS PANDAS Recovery Poem
A PANS PANDAS Recovery Poem

8 years ago, I was diagnosed with Pandas 7 years ago, I wobbled on my feet 6 years ago, I moved forward with my life 5 years ago, I realized why I was different 4 years ago, I didn’t let it break...

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Immunological causes of obsessive-compulsive disorder: is it time for the concept of an “autoimmune OCD” subtype?
Endres D, Pollak TA, Bechter K, Denzel D, Pitsch K, Nickel K, Runge K, Pankratz B, Klatzmann D, Tamouza R, Mallet L, Leboyer M, Prüss H, Voderholzer U, Cunningham JL; ECNP Network Immuno-NeuroPsychiatry, Domschke K, Tebartz van Elst L, Schiele MA. Immunological causes of obsessive-compulsive disorder: is it time for the concept of an “autoimmune OCD” subtype? Transl Psychiatry. 2022 Jan 10;12(1):5. doi: 10.1038/s41398-021-01700-4. PMID: 35013105; PMCID: PMC8744027.
  • There is increasing evidence for secondary immune-mediated forms of OCD.
  • The DSM-5 and novel ICD-11 criteria include the category of secondary OCD, without, however, providing guidelines according to which such a diagnosis should be established.
  • The authors have drafted a first proposal of clinical criteria for the definition of secondary autoimmune OCD.
  • Recognizing the autoimmune causes of OCD could inform additional therapeutic options for the affected patients to promote treatment response and reduce chronicity.”
Immunological causes of obsessive-compulsive disorder: is it time for the concept of an “autoimmune OCD” subtype?

Endres, D., Pollak, T.A., Bechter, K. et al. Immunological causes of obsessive-compulsive disorder: is it time for the concept of an “autoimmune OCD” subtype?. Transl Psychiatry 12, 5 (2022). https://doi.org/10.1038/s41398-021-01700-4

Conclusion: There is increasing evidence for secondary immune-mediated forms of OCD. The DSM-5 and novel ICD-11 criteria include the category of secondary OCD, without, however, providing guidelines according to which such a diagnosis should be established. In the current paper, the authors have drafted a first proposal of clinical criteria for the definition of secondary autoimmune OCD. Future studies should investigate the prevalence (e.g., by analyzing the rate of neuronal antibodies in patients with OCD), diagnostic regimes (combination and comparison of different diagnostic methods), and optimal therapy of autoimmune OCD, including the development of clear treatment algorithms and clinical guidelines. Recognizing the autoimmune causes of OCD could inform additional therapeutic options for the affected patients to promote treatment response and reduce chronicity.

Pathophysiologically, the following subtypes should currently be distinguished:

  1. 1. OCD with PANDAS/PANS,
  2. 2. OCD with neuronal antibodies: a. against well-characterized cell surface antigens (such as NMDA-R), b. against well-characterized paraneoplastic, intracellular antigens (such as Ma2), and c. against non-well-characterized and novel neuronal autoantibodies,
  3. 3. OCD in the context of systemic autoimmune diseases with potential brain involvement (such as systematic lupus erythematosus),
  4. 4. OCD in the context of established autoimmune CNS disorders (such as multiple sclerosis).
Hold Onto Hope!
Hold Onto Hope!

At the age of 8, my life, as it was, was taken in a week of sickness because of the flu. I woke up with hallucinations, severe OCD, and ADHD-like symptoms. I didn’t know what was wrong with me. I...

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‘These doctors don’t believe in PANS’: Confronting uncertainty and a collapsing model of medical care

LaRusso, M. & Abadía-Barrero, C. (2021). “These doctors don’t believe in PANS”: Confronting Uncertainty and a Collapsing Model of Medical Care. Chapter 9, pp. 197-216. In Montesi, Laura and Calestani, Melania (Eds.) Managing Chronicity in Unequal States. Ethnographic perspectives on caring. University College of London Press, ISBN. 9781800080287.

“This chapter presents ethnographic research in the United States with families with children affected by PANS, a relatively new condition that is defying the disciplinary borders between infectious diseases, environmental causes of immune dysregulation, neurological problems and developmental psychopathology in paediatrics care. PANS opens a window to examine critically why the hegemony of a biomedical model of care structured around sub- specialties is collapsing. In facing the uncertainty of the new condition, families’ approach to care emphasises the need for comprehensiveness and immediacy; however, biomedicine seems to be ill- equipped to meet those needs. Rather than offering support and facilitating a path to recovery, clinicians often challenge the knowledge of families, negate PANS as a viable diagnosis, and delay adequate care, which results in increased harm to both the child and the family. Furthermore, the chapter shows how families incur significant debt by trying several therapeutic options that are not covered by insurance. This signals how the inadequacy of the social welfare and broade rsafety nets in the United States further magnify children’s and parents’ suffering.”