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THE HERD April 2021 1st edition

theherd - THE HERD April 2021 1st edition

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Selected Highlighted News in the field of Autoimmune Encephalitis~ April 2021 1st Edition

In this Issue~


  • *Announcements: AE Study in Australia seeks your participation
  • *Children’s Corner (for all ages): Distinguishing between two very similar pediatric brain conditions Identifying characteristics of ADEM and AE may lead to better treatments 
  • ABI Rehabilitation: Working Memory Worksheets, Earth Day Word Scrambles
  • Useful Tips for the AE Warrior: How to Make the Most of Your Virtual Visit to the Doctor
  • Most Popular Visual Downloads: Overview of treatment for autoimmune encephalitis patients and includes best practice advice when relapse occurs, I can’t get out of bed
  • *COVID-19’s Impact on the AE Community:  The COVID Virus May Prompt the Body to Attack Itself
  • *Featured AE Article: Neurology Live interview with Dr. Divyanshu Dubey, MBBS, about his presented talk at ACTRIMS Forum 2021 on autoimmune encephalitis 
  • *Clinician’s Corner: Tofacitinib treatment for refractory autoimmune encephalitis
  • *COVID-19 Clinician’s Corner: Spectrum, Risk Factors, and Outcomes of Neurological and Psychiatric Complications of COVID-19: A UK-Wide Cross-Sectional Surveillance Study
  • *Open Access: Autoimmune encephalitis with psychiatric features in adults: historical evolution and prospective challenge
  • *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
  • *AE Warrior Store: Puzzles featuring original art by AE patients

AE Study Seek Your Participation

AE Patients Residing in Australia ~Your Participation is Needed

Dr. Mastura Monif, a member of the IAES Medical Advisory board who is located in Australia, is conducting a study on autoimmune encephalitis and seeks patient participation.

The Monif Group 

Leads The Australian Autoimmune Encephalitis Consortium Project that consists of up to 13 health and academic centers around the country bringing national experts together to tackle the issue of Autoimmune Encephalitis facing the Australian population.

The group has formed the Australian Autoimmune Encephalitis Consortium bringing together national experts from 4 states around the country to tackle the issue of AE facing the Australian Health sector. With this study, they hope to produce the largest cohort of retrospective and prospective cases of AE in Australia with the aim of gaining a better understanding of disease trajectory as well as identifying key clinical, electroencephalogram/seizure phenotype, cellular and biochemical, radiological & cognitive biomarkers of disease onset, progression & outcome. This study brings together a collaborative & multidisciplinary team of neurologists, neuroimmunologists, epilepsy experts, neuropsychologists, neuroradiologists, psychiatrists, and neuroscientists. The findings are hoped to generate extensive data regarding AE as well as the production of clinical guidelines for early identification, diagnosis & treatment of these devastating conditions.

E-mail Dr. Monif regarding Study Participation


Children’s Corner

Distinguishing between two very similar pediatric brain conditions Identifying characteristics of ADEM and AE may lead to better treatments

Easy read.

Slight differences in clinical features can help physicians distinguish between two rare but similar forms of autoimmune brain inflammation in children, a new study by UT Southwestern scientists suggests.

The most common forms of immune-related pediatric encephalitis are acute disseminated encephalomyelitis (ADEM) and autoimmune encephalitis (AE). Although these are two distinct disorders, explains UTSW pediatric critical care fellow Molly E. McGetrick, M.D., their presentation — including disorientation and other signs of altered mental status, seizures, or motor and sensory abnormalities — is largely the same in children, hindering an accurate diagnosis. In addition, the rarity of AE and ADEM makes amassing data to help distinguish these conditions more difficult.

“Despite their similarities in presentation, patients with AE tend to have a more prolonged and protracted condition that requires more therapies than those with ADEM,” McGetrick explains. “Being able to definitively distinguish between these conditions could help doctors guide patients and their families on what to expect.”

To reveal the unique features of each condition, McGetrick and her colleagues searched medical records spanning a decade ending in December 2019 for pediatric patients diagnosed at UT Southwestern with encephalitis or encephalomyelitis. They identified 75 patients diagnosed with immune-related encephalitis: 23 with ADEM and 52 with AE.



Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from AE.  They are a great activity to help your AE warrior develop their problem-solving and analytical skills.

Here’s a fun word search puzzle for St. Patrick’s Day. It is ranked “Hard” and features hidden St. Patrick’s Day words to find.

ABI Rehabilitation From AE

Working Memory Worksheets

Are you working on your cognitive rehabilitation from AE?

Our friends at HappyNeuron Pro have released its 31stnd worksheet packet!

This worksheet includes 4 exercises. From working with shapes and colors to remembering patterns, and common English words this packet is all you need. These exercises carry over to everyday tasks, such as reading an article or searching a web page for relevant information. They are ideal for re-learning and re-training the brain after brain injury received by autoimmune encephalitis. 

Earth Day Word Scrambles

Useful Tips for Patients & Families

How to Make the Most of Your Virtual Visit to the Doctor

An expert shares tips to assist patients before, during, and after online appointments. With a majority of the world’s population following the stay-at-home orders in their countries, many people have turned to video visits to connect with their physicians. These visits have become the new normal for getting regular checkups.

Most Popular Download

Overview of treatment for autoimmune encephalitis patients and includes best practice advice when relapse occurs

This schematic from Neurology Journal provides an overview of treatment for autoimmune encephalitis patients and includes best practice advice when relapse occurs.

The speed of recovery, degree of residual deficit, and frequency of relapse vary according to the type of autoimmune encephalitis. In a series of 577 patients with anti-NMDAR encephalitis,
53% had clinical improvement within 4 weeks, and 81% had substantial recovery (i.e., mild or no residual symptoms) at 24 months. Another study showed that patients with antiLGI1 encephalitis had a more rapid response but that only 70% had substantial recovery at 24 months.
For all types of autoimmune encephalitides, prompt immunotherapy has been associated with a favorable outcome; spontaneous clinical improvement is infrequent. The frequency of clinical relapse in the encephalitides associated with antibodies against NMDAR, AMPAR, LGI1, CASPR2, or DPPX ranges from 12 to 35%. Relapses often occur when immunotherapy is reduced or discontinued. There is anecdotal evidence that cases of anti-LGI1 or anti-NMDAR encephalitis can relapse many years after the first episode. Relapses may herald recurrence of the associated tumor or a tumor that was missed in the initial episode. Immunotherapy and treatment of the tumor, if it was missed initially, usually results in improvement.

I Can’t Get Out of Bed

COVID-19’s Impact on the AE Community

The COVID Virus May Prompt the Body to Attack Itself



An international team of researchers studying COVID-19 has made a startling and pivotal discovery: The virus appears to cause the body to make weapons to attack its own tissues.

The finding could unlock a number of COVID’s clinical mysteries. They include the puzzling collection of symptoms that can come with the infection; the persistence of symptoms in some people for months after they clear the virus, a phenomenon dubbed long COVID; and why some children and adults have a serious inflammatory syndrome, called MIS-C or MIS-A, after their infections.


Featured AE Article~

Neurology Live interview with Dr. Divyanshu Dubey, MBBS, about his presented talk at ACTRIMS Forum 2021 on autoimmune encephalitis

The assistant professor of neurology at Mayo Clinic, Divyanshu Dubey, MBBS, discussed his presented talk at ACTRIMS Forum 2021 on autoimmune encephalitis with Neurology Live.

Autoimmune encephalitis is the collection of related conditions in which the body’s immune system attacks the brain, causing inflammation. Like multiple sclerosis (MS), the disease can be progressive or relapsing-remitting, with alternating flare-ups and periods of recovery. It has many subtypes that are dependent on the antibodies present which mistakenly attack brain cells.

Part 1

In the first half of an interview with NeurologyLive, Dubey discussed his presentation, some of the major topics surrounding autoimmune encephalitis research, and why there has been steady momentum within the field over the past few years.

What is driving the sudden interest in research on autoimmune encephalitis?

What value does discussing the spectrum of these sorts of non-MS inflammatory CNS diseases bring towards the MS field and the specialists and researchers within it?

In his final thoughts, he stated “I would just like to highlight that we are learning that these non-MS inflammatory conditions such as autoimmune encephalitis are not as uncommon and rare as we once thought they were. Incidence and prevalence of autoimmune encephalitis is as common as non-infectious encephalitis. Learning about these conditions and how to treat them is going to be important for our neurology practice, both inpatient as well as outpatient.”

Part 2

Dr. Dubey detailed the areas of autoimmune encephalitis research that needs more attention, as well as the diagnostic potential of autoantibody assays. Some of the questions he covered were: 

Are there areas or aspects that you feel need more research or you feel are kind of the next steps in research in this area?   How can understanding about the diagnostic potential of autoantibody assays aid clinicians in clinical care?   What is your main takeaway about the state of science and research in autoimmune encephalitis and MS amid the COVID pandemic?


Clinician’s Corner

Tofacitinib treatment for refractory autoimmune encephalitis

To treat intractable cases of autoimmune encephalitis, the need for novel immunotherapy that penetrates the blood-brain barrier (BBB) is increasing. Tofacitinib is a Janus kinase (JAK) inhibitor used to treat refractory immune-mediated diseases that effectively penetrates the BBB. Accordingly, tofacitinib could be a new option for patients with refractory autoimmune encephalitis.

A total of eight patients were treated with tofacitinib; two had good responses (clinical global impression-improvement score [CGI-I] = 1 or 2), three had partial responses (CGI-I = 3), and three showed no significant improvements (CGI-I = 4) in response to tofacitinib. The two good responders showed the improvement of chronic autoimmune meningoencephalitis and the cessation of the new-onset refractory status epilepticus in anti-myelin oligodendrocyte glycoprotein (MOG)-associated disorder, which was previously intractable to anesthetics and the other immunotherapies. No patients had serious side effects. Our findings suggest the potential of tofacitinib as a therapeutic option for central nervous system autoimmune diseases.

COVID-19 Clinician’s Corner


Spectrum, Risk Factors, and Outcomes of Neurological and Psychiatric Complications of COVID-19: A UK-Wide Cross-Sectional Surveillance Study

The group studied COVID-associated neurological and psychiatric complications, to investigate the key clinical features, including those associated with outcome.

267 cases were included.

A severe encephalopathy occurs after COVID-19 and is associated with requiring intensive care and ventilation. COVID-19 is associated with large and multi-vessel stroke in young people, often with non-CNS thrombotic disease, and requires further study. Nevertheless, conventional, modifiable risk factors were associated with stroke, even in younger people, suggesting the potential for public health intervention for this and future pandemics. These clinical data should be combined with blood and neuroimaging biomarkers so that patients can be stratified to targeted existing or novel therapeutics.

Autoimmune encephalitis with psychiatric features in adults: historical evolution and prospective challenge

This review aims to delineate the psychiatric spectrum of autoantibody-associated autoimmune encephalitis over time through its discoveries of antibodies. Autoimmune encephalitis is a disorder that can dynamically alter its phenotypical appearance over time. It is often characterized by an initial psychiatric manifestation or reveals predominant or isolated psychiatric features. The aim of this review is to depict the historic evolution of the published psychiatric phenomenology of autoimmune encephalitis.

AE Trivia Playing Cards

The perfect companion for patients, Caregivers & Therapist

Created by IAES and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE).  This deck answers 52 of the most commonly asked questions about AE and doubles as a rehabilitation tool.  Increase your knowledge and become a strong advocate quickly and easily with AE trivia cards. 

We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product. 

AE Warrior Store

Puzzles Featuring Original Art by AE Warriors

New arrivals ~ The AE Warrior Store has 13 puzzles featuring original art by autoimmune encephalitis patients available.  Puzzles come in three sizes, all rated as ‘challenging’, 60-pieces, 110-pieces, and 252-pieces. A unique gift for any AE Warrior working on cognitive rehabilitation due to brain injury from AE & a wonderful collector’s item. Working on a puzzle designed by a fellow AE patient who has lent their talent to an effort to help other AE patients reach their rehabilitation goals will inspire any AE Warrior and reinforce the knowledge that no one walks this journey alone. We are family to each other and are always #StrongerTogether. 

Puzzles are a highly recommended cognitive exercise for anyone with a brain injury or in recovery from illness. Puzzles assist with comprehension, organization, memory, hand-eye coordination, fine motor skills and provide goal setting, patience, and a sense of achievement.

Ways to Shop & Support IAES

Have you wanted to support IAES, autoimmune encephalitis awareness, and the AE Warrior that you love?

Have you found our services helpful? Do you want to make sure patients are identified early and that they and their loved ones receive the best help possible during this difficult journey?

Here is an easy and affordable way to donate without feeling a thing when shopping with your Paypal account. Each time you check out you will be reminded that you can give $1 to IAES.

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.

International Autoimmune Encephalitis Society is proud to be a platinum level participant on the Guide Star exchange, demonstrating or commitment to financial transparency.  IAES is a charitable non-profit 501 (c)(3) organization. Tax ID#81-3752344

Donations raised are greatly appreciated and directly support research, patients, caregivers, and families through their journey so the best outcomes can 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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