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theherd - THE HERD April 2021 2nd edition

Don’t Be Left Behind. Keep Up With THE HERD!

Selected Highlighted News in the field of Autoimmune Encephalitis~ April 2021 2nd Edition

In this Issue~


  • *Announcements: AE Study in Australia seeks your participation
  • *Children’s Corner (for all ages): Neuroimaging manifestations in children with SARS-CoV-2 infection: a multinational, multicenter collaborative study, Pediatric Autoimmune Encephalitis Fact Sheet, Pediatric AE video presentation 
  • ABI Rehabilitation: Visual Language Worksheets, Spring themed Word scramble
  • Useful Tips for the AE Warrior:  Keep an AE Journal, The Science behind Writing in Cursive, USA Disabled Students can have their Student Loans Discharged
  • Most Popular Visual Downloads: IVIG Side Effects Chart, We are #AEWarriors
  • *COVID-19’s Impact on the AE Community:  6-month neurological and psychiatric outcomes in 236 379 survivors of COVID-19: a retrospective cohort study using electronic health records

  • *Featured AE Article: Encephalitis: ‘Friendly fire’ in my brain saw me sectioned in error
  • *Clinician’s Corner: The Insula Is a Hub for Functional Brain Network in Patients With Anti-N-Methyl-D-Aspartate Receptor Encephalitis
  • *COVID-19 Clinician’s Corner: Post-acute COVID-19 syndrome
  • *Open Access: Residual Fatigue and Cognitive Deficits in Patients After LGI-1
  • *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

Dr Mastura Monif-Victoria-Australia

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


AE Warrior, Elly Knaggs, Makes News In Australia


Elly Knaggs-35yrs-Australia

IAES would like to congratulate Elly Knaggs for contacting her local news and getting them to do a story about her case of Autoimmune Encephalitis.

After Elly’s IAES Blog story, My Magical Demon of a Brain (Elly has submitted a part 2 to the IAES Blog team you will read in the future) was published last February, she took her story and contacted the local news to see if she could expand her advocacy. Indeed, they picked up her story and it has just been published.

We encourage all of you to write your story for the IAES blog and do the same. You can follow the simple steps to getting your story in the paper by using our press release. The #BeAEaware campaign is an on-going campaign to raise awareness and our press release has quotes from several AE experts. 

Children’s Corner

Neuroimaging manifestations in children with SARS-CoV-2 infection: a multinational, multicenter collaborative study

38 children with neurological disease related to SARS-CoV-2 infection were identified. Recurring patterns of disease were identified, with neuroimaging abnormalities ranging from mild to severe. The most common imaging patterns were postinfectious immune-mediated acute disseminated encephalomyelitis-like changes of the brain (16 patients), myelitis (eight patients), and neural enhancement (13 patients). Cranial nerve enhancement could occur in the absence of corresponding neurological symptoms. Splenial lesions (seven patients) and myositis (four patients) were predominantly observed in children with multisystem inflammatory syndrome. Cerebrovascular complications in children were less common than in adults. Significant pre-existing conditions were absent and most children had favourable outcomes. However, fatal atypical CNS co-infections developed in four previously healthy children infected with SARS-CoV-2.


Acute-phase and delayed-phase SARS-CoV-2-related CNS abnormalities are seen in children. Recurring patterns of disease and atypical neuroimaging manifestations can be found and should be recognized being as potentially due to SARS-CoV-2 infection as an underlying etiological factor. Studies of pediatric specific cohorts are needed to better understand the effects of SARS-CoV-2 infection on the CNS at presentation and on long-term follow-up in children.

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Pediatric Autoimmune Encephalitis Fact Sheet

IAES would like to thank Dr. Michael Sweeney, a member of our Medical Advisory Board and recent presenter during AE awareness month, for assisting IAES with this Fact Sheet on Pediatric Autoimmune Encephalitis. Since its publication a year ago, it has been referenced by parents as one of their most valued resources.
We encourage you to go to our website and review the many handouts and fact sheets we have for you there. You will find it located under the ‘For Patients’ tab. Check back regularly for monthly additions.

ABI Rehabilitation From AE

Cognitive rehabilitation- FB-links to cognitive exercise worksheets on website

Visual-language Worksheets

Are you working on your cognitive rehabilitation from AE?

Our friends at HappyNeuron Pro have released its 33rd worksheet packet!

This worksheet includes 4 exercises that focuses on visual-language.

 Language is a complex cognitive skill that involves executive functioning, memory, visual, and auditory processing skills. Sometimes, people may have difficulty with one or more aspects of language such as word retrieval, sentence comprehension, or word choice. These 4 exercises target different cognitive skills involved in language. 

  They are ideal for re-learning and re-training the brain after brain injury received by autoimmune encephalitis. 

Spring Word Scrambles

Spring word scramble

Word Scramble puzzles and puzzles of all types 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.

In celebration of Spring arriving in the Northern hemisphere, try all four word scramble puzzles ranging from ‘easy’, ‘medium’, ‘hard’, ‘super’.  This one is ranked ‘hard’.

Then look through the puzzles in the AE Warrior Store that have been created with art by fellow AE patients. You are sure to become inspired and challenged in your recovery efforts.

Useful Tips for Patients & Families

My Journey with AE-notebook

Keep a Journal

Ideal for patients and caregivers for keeping a journal, tracking symptoms, or making notes during a doctor’s appointment. This notebook will help keep you organized and acts as a conversation starter in raising awareness of what autoimmune encephalitis is by the description of AE on the back.

Keeping a journal helps you emotionally process your experiences and assists in brain injury rehabilitation. Writing in cursive helps to build neural pathways necessary to stimulate brain activity that enables vision-motor control and language fluency necessary for cognitive development, learning, reading, sports, socialization, and everyday tasks.


·        tactile information (touch/sensation)

·        hand-eye coordination

·        movement control (fine motor dexterity)

·        visual integration

·        directing movement by thought, and

·        thinking simultaneously

USA Disabled Students can have their Student Loans Discharged

Do You have student loans?

Individuals who have been determined to be disabled can have their student loans discharged, but this can be reversed depending on the individuals income. President Biden is looking at discharging student loans held by disabled individuals even if they have been reinstated.

Most Popular Download

IVIG Side Effects Chart


Are you having IVIG?
This helpful visual chart lists out the side effects of IVIG. We recommend you copy/paste it to your phone or download the image so you can use it as a reference guide while undergoing IVIG treatment.

We Are #AEWarriors

We are #AEWarriors_FB_ Post

COVID-19’s Impact on the AE Community

6-month neurological and psychiatric outcomes in 236 379 survivors of COVID-19: a retrospective cohort study using electronic health records



*One of the big take-homes from this paper is that in this much larger sample, an association between COVID-19 infection and psychosis (both new-onset and exacerbations) emerges, that wasn’t in the previous, smaller dataset from these authors.
Neurological and psychiatric sequelae of COVID-19 have been reported, but more data are needed to adequately assess the effects of COVID-19 on brain health. We aimed to provide robust estimates of incidence rates and relative risks of neurological and psychiatric diagnoses in patients in the 6 months following a COVID-19 diagnosis.
Among 236 379 patients diagnosed with COVID-19, the estimated incidence of a neurological or psychiatric diagnosis in the following 6 months was 33·62% with 12·84% receiving their first such diagnosis.
This study provides evidence for substantial neurological and psychiatric morbidity in the 6 months after COVID-19 infection. Risks were greatest in, but not limited to, patients who had severe COVID-19.


Featured AE Article~

Encephalitis: ‘Friendly fire’ in my brain saw me sectioned in error

IAES member and model, Lucy Dawson was 21 when she was sectioned in error due to an illness that was difficult to diagnose.

Lucy has been a strong advocate throughout her AE journey with anti-NMDAr AE. This article includes a 28-minute audio interview where Lucy tells her story.

Lucy was in her final year studying criminology at the University of Leicester in 2016 when she became ill and underwent a complete personality change.

On her 21st birthday, a month after she was admitted to hospital, doctors told her parents she would have to undergo ECT (electroconvulsive therapy) or she would die.

During her stay at the psychiatric hospital, Lucy had a seizure and fell from her bed landing on a radiation pipe. The third degree burns she received from being there undiscovered for such a long period of time left her with an additional disability. Today Lucy is a strong advocate for AE and is enjoying a successful modeling career.


Clinician’s Corner

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The Insula Is a Hub for Functional Brain Network in Patients With Anti-N-Methyl-D-Aspartate Receptor Encephalitis

This research aimed to assess changes in the functional brain network in patients with anti-NMDAR encephalitis and whether these changes lead to cognitive impairment.

Conclusion: This research describes topological abnormalities in the functional brain network in anti-NMDAR encephalitis. These results will be conducive to understand the structure and function of the brain network of patients with anti-NMDAR encephalitis and further explore the neuropathophysiological mechanisms.

woman in pain wearing mask covid

COVID-19 Clinician’s Corner


Post-acute COVID-19 syndrome

COVID-19 is now recognized as a multi-organ disease with a broad spectrum of manifestations. Similarly to post-acute viral syndromes described in survivors of other virulent coronavirus epidemics, there are increasing reports of persistent and prolonged effects after acute COVID-19. Patient advocacy groups, many members of which identify themselves as long haulers, have helped contribute to the recognition of post-acute COVID-19, a syndrome characterized by persistent symptoms and/or delayed or long-term complications beyond 4 weeks from the onset of symptoms.

Here, we provide a comprehensive review of the current literature on post-acute COVID-19, its pathophysiology and its organ-specific sequelae. Finally, we discuss relevant considerations for the multidisciplinary care of COVID-19 survivors and propose a framework for the identification of those at high risk for post-acute COVID-19 and their coordinated management through dedicated COVID-19 clinics.

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Residual Fatigue and Cognitive Deficits in Patients After LGI-1 Antibody Encephalitis

Fatigue is a major residual feature in LGI1 antibody patients. Inspired by seeing >100 of these patients, and hearing their stories.

 Leucine-rich glioma-inactivated 1 antibody encephalitis (LGI1-Ab-E) typically affects older men who present with prominent amnesia and frequent seizures and often shows a marked short-term improvement with immunotherapies. In particular, seizure cessation occurs within just a few weeks.

However, only traditional cognitive domains have been investigated as longer-term outcomes, with improvements in cognition described as “not good enough.”

Here, motivated by patient feedback and our clinical observations, we aimed to quantify the residual deficits observed after LGI1-Ab-E across several functional domains.

The data here indicate that despite a “good” mRS, several long-term residual deficits remain: across domains of cognition, mood, and fatigue, with a significant effect on employment status. Our cohort’s mean mRS was comparable with other LGI1-Ab-E studies, suggesting this traditional outcome measure captures only limited long-term morbidity in multiple studies. Fatigue was the most commonly impaired domain in our cohort, a novel finding in LGI1-Ab-E. This observation is closely reflected by the many patients in our clinic who volunteer fatigue as a major residual symptom. Also, it parallels findings in pediatric N-methyl-D-aspartate receptor antibody encephalitis, where fatigue is associated with quality of life.

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.

shop with Paypal-Facebook Post
Shop on line amazon Smiles FB - THE HERD April 2021 2nd edition

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.

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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.

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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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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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