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THE HERD June 2020~ 1st edition

theherd - THE HERD June 2020~ 1st edition

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Selected Highlighted News in the field of Autoimmune

Encephalitis June 2020 1st edition

In this Issue~


    •  Announcements: New Fact Sheets on Aphasia and Treatment available, AE Trivia Playing Cards hailed by Clinicians, PBS documentary seeks AE Warriors to Interview
    • Children’s Corner: Talking to Children About COVID-19
    • Most Popular Visual of the Month: Life with AE
    • Most Popular APP: Word Runner: Speed Reading for Kindle
    • COVID-19’s Impact on the AE Community: 1st Case Report of Covid-19 triggering anti-NMDAr encephalitis; Acute disseminated encephalomyelitis after SARS-CoV-2 infection; Psychiatric and neuropsychiatric presentations associated with severe coronavirus infections: a systematic review 
    • Clinician’s Corner: Specific Psychiatric Features Identify Anti-NMDAR Encephalitis Before Neurological Deterioration 
    • Open Access: The autoantibody-mediated encephalitides: from clinical observations to molecular pathogenesis

Introducing: New Fact Sheets to Enhance your Understanding of Aphasia and AE Treatment now Available

IAES in partnership with  PennNeuroKnow has added two new valuable fact sheets to our growing downloadable library.

PNK is a group of Ph.D. neuroscience students who have a passion for sharing their love of neuroscience by presenting information in easy to understand language for the layperson.

Do you have problems with word-finding? Do you think you said the right thing but it came out as ‘word salad’? Have you noticed that you are having trouble writing? This symptom is seen in AE and is known as aphasia. Learn more in ‘Aphasia as a symptom of Autoimmune Encephalitis’. 

If you want to have a better understanding of the treatments in AE, or want other people in your life to gain understanding please review ‘Treatments in Autoimmune Encephalitis’. 

All handouts and fact sheets are located under the ‘For Patients’ tab on our website.  

Our excitement continues to build over the rave reviews we are receiving from experts in the field about our AE Trivia playing cards. Doctors have begun to provide decks to their patients and have been receiving smiles all around.

The support patients have been reporting is so exciting and gratifying to hear. This simple educational and rehabilitation tool appears destined to be the greatest personal support any AE patient, caregiver, therapist, teacher or medical professional can own.

Created by IAES and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE).  AE Trivia cards answer the most common questions about AE. 



You can now follow us on Instagram at intl_ae_society for educational and entertaining  visual information.

PBS is interested in speaking to adults (18+) who were initially diagnosed with mental illness, perhaps even institutionalized, before their anti-NDMA autoimmune encephalitis was discovered. From PBS’ perspective, ideal candidates will have videos or audio recordings of their journey (personal phone recordings, hospital/ diagnostic videos or other documentation of their symptoms and/or treatment) so we can visualize your story. The process will involve some back and forth via email/ phone to get to know potential subjects and their stories over the next few weeks. We’d love to hear from you. 

Children’s Corner





Facing a health emergency can bring up feelings of stress, uncertainty, and confusion, especially for young children. While we don’t want to overload them with scary information, we can try to answer their questions honestly. There are simple ways to talk about COVID-19 with young children, and offer comfort. 

In this helpful hand out the familiar and beloved characters of Sesame Street help you do just that. 

Most Popular Visual

COVID-19’s impact on the AE Community

IAES is flattered to report the NORD (National Organization of Rare Diseases) has taken notice of our efforts to educate the community about COVID-19 and has recommended our website as a premier source of reliable and up to date information.

Anti-NMDA receptor encephalitis in a psychiatric COVID-19 patient: A case report





Anti N-Methyl-D aspartate (NMDA) receptor (anti-NMDAR) encephalitis is one of the most common types of autoimmune encephalitis with its clinical presentation characterized by simultaneous presentation of neurological and psychiatric symptoms, the latter miming schizophrenia and psychotic spectrum disorders or substance-induced psychosis. The importance of this case study is due to the probability that COVID-19 leads to neurological damage, an indirect pathway involving the immune system. Interleukin (IL)-6, an important member of the cytokine storm, is positively correlated with the severity of Coronavirus symptoms. Additional experiments have confirmed that primary glial cells cultured in vitro secrete a large amount of inflammatory factors including IL-6, IL-12, IL-15, and TNF-alpha after being infected with SARS-CoV-2. This data suggests that the activation of immune cells in the brain may cause inflammation and brain damage.


COVID-19 patients having known psychiatric disorders should be monitored closely for neurologic manifestations including headache, dizziness, and symptoms, changes in mental status, meningeal signs, dyskinesias. Patients with severe infection maybe at greater risk for developing neurological sequelae and increased mortality. Furthermore, SARS-CoV-2 infection should be considered as a differential diagnosis in psychiatric patients with presentation of sudden onset symptoms including respiratory distress and other Covid-19 related symptoms to avoid wrong or delayed diagnosis.

Acute disseminated encephalomyelitis after SARS-CoV-2 infection


We report a rare case of an immune-mediated CNS disease that occurs after SARS-CoV-2 infection. Phenotypically, the disease resembled an atypical form of neuromyelitis optica spectrum disorder; however, (1) the hyperacute dynamic of the disease, (2) the presence of multiple, synchronous, enhancing brain lesions, (3) the lack of anti-AQ4 or anti-MOG abs, (4) the absence of longitudinally extended transverse myelitis, and (5) the presence of a viral infection preceding the development of neurologic symptoms do not support this hypothesis, favoring ADEM diagnosis.

Psychiatric and neuropsychiatric presentations associated with severe coronavirus infections: a systematic review and meta-analysis with comparison to the COVID-19 pandemic


If infection with SARS-CoV-2 follows a similar course to that with SARS-CoV or MERS-CoV, most patients should recover without experiencing mental illness. SARS-CoV-2 might cause delirium in a significant proportion of patients in the acute stage. Clinicians should be aware of the possibility of depression, anxiety, fatigue, post-traumatic stress disorder, and rarer neuropsychiatric syndromes in the longer term.

Most Popular APP of the Month

Word Runner: Speed Reading for Kindle

Word Runner displays individual words in rapid succession. Instead of your eyes tracking across the page, they remain fixed on a single, central point. Lengthy words remain on the screen for a longer time, and natural breaks like paragraphs are marked by a pause.

Display speed is configurable from 100 to 900 words per minute. Users can slow down, stop, or back up by pressing and holding the screen.


Clinician’s Corner

Specific Psychiatric Features Identify Anti-NMDAR Encephalitis Before Neurological Deterioration

Specific Psychiatric Features Identify Anti-NMDAR Encephalitis Before Neurological Deterioration

Objective: Evaluate the psychiatric presentation of anti-NMDAR encephalitis to identify features that help differentiate from a primary psychiatric disorder.


Conclusions: Several features including prodromal cognitive deficits, speech disturbance, antipsychotic sensitivity and catatonia is seen early in the course of anti-NMDAR encephalitis. These key features would not be typical of primary psychiatric disease and clinicians should have a low index of suspicion to proceed to lumbar puncture.


Much like the mechanisms that make placebo treatments work, we know that provider warmth and competence are positively associated with health at the biological level. Personal protective equipment (PPE) signals competence; portraits could be one of the only signals of warmth for patients who have, or may have, COVID-19. PPE Portraits are disposable portrait picture stickers (4×5 inches) put on PPE that can help patients and providers form a personal connection to positively impact patient health.


The autoantibody-mediated encephalitides: from clinical observations to molecular pathogenesis

Probably the best summary of how autoimmunity gets initiated is in this great review from Oxford Autoimmune Neurology Group,  which is generally fantastic and up-to-date all-round primer for many of the clinical and mechanistic issues. 

Table 2 is an outstanding overview of the Characteristics of autoimmune encephalitis associated with neuronal surface antibodies.  


During the COVID-19 pandemic, it is vitally important that you #StayHome and practice #SocialDistancing. Grocery shopping, as well as all shopping, should be done online.

When you shop Amazon Smiles and select IAES as the non-profit you want to support, Amazon will donate 5% of our purchases to the International Autoimmune Encephalitis Society.

The need for our services has increased exponentially. This simple act of kindness, will support the work we do and advance our ability to service the community.

Are YOU an IAES angel? Do you love someone with AE? Do you want to raise AE awareness to not just support AE Warriors but lead researchers to finding a cure?  The IAES Angel is someone who lifted IAES upward by ensuring that comfort, guidance and improved health is brought into an AE patient’s life.

IAES Angels are motivated by their Spirit of giving.  They are Champions in raising AE awareness. Your devotion to supporting our mission and improving the lives of those who suffer from AE is felt mightily and immediately put to use. 

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you this badge and profile frame to place on your Facebook page or Website.  As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

Your donations are greatly appreciated. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE so that best outcomes may be reached. Your contribution to our mission will help save a life and improve the quality of lives for others.  Be a part of the solution by supporting IAES.

International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 


Driven by the knowledge that “Education is Power”, Int’l AE Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones on Face Book, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

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