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THE HERD July 2020~ 2nd edition

theherd - THE HERD July 2020~ 2nd edition

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

Selected Highlighted News in the field of Autoimmune

Encephalitis July 2020 2nd edition

In this Issue~


    •  Announcements: AE Warrior Store opens, AE Trivia Playing Cards hailed by Clinicians
    • Children’s Corner: Storyline Online
    • Most Popular Visual of the Month: AE Medical Alert Card & Behavior Change/AE symptoms I.D. Card
    • COVID-19’s Impact on the AE Community: Researchers: COVID-19 spreads ten meters or more by breathing, Scientists warn of a potential wave of COVID-linked brain damage, WHO & Dr. Fauchi virtual COVID-19 conference
    • Most Popular Download: Humorous Bar of Soap wrappers that encourage #WashYourHands
    • Clinician’s Corner: Cerebrospinal Fluid Findings in Patients With Autoimmune Encephalitis—A Systematic Analysis
    • COVID-19 Clinician’s Corner: Postinfectious brainstem encephalitis associated with SARS-CoV-2
    • Open Access: Anti-NMDA receptor encephalitis, Sleep Disorders in anti-NMDAr encephalitis

IAES has designed several 3-ply masks that alert the public to the fact that you have AE and are at high risk of COVID-19 infection. In order to add a level of additional protection, we have designed t-shirts and a hat that any family member or loved one can wear signaling ‘high risk’ to COVID-19 infection. The goal is that we assist in keeping you and your family safe. 

Visit our AE Warrior store to see a variety of products designed to raise AE awareness. 

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. 

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

Children’s Corner





Storyline Online  is a free resource for remote learning during COVID-19.  The SAG-AFTRA Foundation’s Daytime Emmy®-nominated and award-winning children’s literacy website, Storyline Online®, streams videos featuring celebrated actors reading children’s books alongside creatively produced illustrations. Readers include Oprah Winfrey, Chris Pine, Kristen Bell, Rita Moreno, Viola Davis, Jaime Camil, Kevin Costner, Lily Tomlin, Sarah Silverman, Betty White, Wanda Sykes and dozens more.

Storyline Online is available 24 hours a day for children, parents, caregivers, and educators worldwide. Each book includes a supplemental curriculum developed by a credentialed elementary educator, aiming to strengthen comprehension and verbal and written skills for English-language learners.

Most Popular Visual

AE Medical Alert and Behavior Change/Symptoms Card

IAES has designed two autoimmune encephalitis ID cards as a free gift to you. One explains the behavior and communications issues an AE Warrior has with a list of common symptoms on the reverse side. This is handy for law enforcement or the public.
The Emergency Medical I.D. Card we designed specifically states that AE patients are refractory to anti-psychotic medications. These two cards may prevent confusion with the law, misdiagnosis and prevent a psych hold. They may indeed, save your life or quality of life.
Visit our AE Warrior Gifts page to download your free cards and see what other free offerings we have just for you. These cards are featured at the bottom of the page.

COVID-19’s impact on the AE Community

Researchers: Covid-19 spreads ten meters or more by breathing

Easy Read Article ~
A plea issued by 239 scientists from around the world to recognize and mitigate airborne transmission of COVID-19 addressed to international health authorities is to be published in the journal Clinical Infectious Diseases.
Studies by the signatories and other scientists have demonstrated beyond any reasonable doubt that viruses are exhaled in microdroplets small enough to remain aloft in the air and pose a risk of exposure beyond 1 to 2m (6.5 feet) by an infected person.
The measures that need to be taken to mitigate airborne transmission include:

Provide sufficient and effective ventilation (supply clean outdoor air, minimize recirculating air) particularly in public buildings, workplace environments, schools, hospitals, and aged care homes.

Supplement general ventilation with airborne infection controls such as local exhaust, high efficiency air filtration, and germicidal ultraviolet lights.

“We are concerned that people may think they are fully protected by following the current recommendations, but in fact, additional airborne precautions are needed to further reduce the spread of the virus.”


Scientists warn of potential wave of Covid-linked brain damage






Easy Read Article: Scientists warn of a potential wave of coronavirus-related brain damage as new evidence suggested COVID-19 can lead to severe neurological complications, including inflammation, psychosis and delirium. Neuroscientists and specialist brain doctors say emerging evidence of its impact on the brain is concerning. 

“My worry is that we have millions of people with COVID-19 now. And if in a year’s time we have 10 million recovered people and those people have cognitive deficits … then that’s going to affect their ability to work and their ability to go about activities of daily living,” Adrian Owen, a neuroscientist at Western University in Canada, told Reuters in an interview.

In the UCL study, published in the journal Brain, nine patients who had brain inflammation were diagnosed with a rare condition called acute disseminated encephalomyelitis (ADEM) which is more usually seen in children and can be triggered by viral infections.

The team said it would normally see about one adult patient with ADEM per month at their specialist London clinic, but this had risen to at least one a week during the study period, something they described as “a concerning increase”.

A virtual conference on the COVID-19 pandemic with World Health Organization Director-General Tedros and Dr. Anthony Fauci.

Most Popular Downloads~

Bar of Soap Wrapper downloads






#StopTheSpread    #WashYourHands

Providing this bar of soap to those you care about may prevent a devastating result.  Be a part of the solution by giving this fun and motivational gift!

COVID-19 triggers ADEM, anti-NMDAr autoimmune encephalitis, encephalitis, and other neurological diseases. It will leave many with life long disability. Help IAES meet this crisis by making an optional $1 donation each time you download one of these ‘novel’  wrappers.

This soap wrapper download will fit 4 oz bars of soap such as Tom’s, Safeguard, Irish Spring, Caress, Kirk’s Original Castile, or any brand comparable to that size.

Clinician’s Corner

Cerebrospinal Fluid Findings in Patients With Autoimmune Encephalitis—A Systematic Analysis

The different antibody-defined AE subtypes might be highly distinct with regard to their immune pathophysiology. Thus, it is conceivable that the results of basic CSF analysis might also be very different. However, this has not been explored systematically. Here, we systematically reviewed the literature about the 10 most important AE subtypes, AE with antibodies against NMDA, AMPA, glycine, GABAA, and GABAB receptors as well as DPPX, CASPR2, LGI1, IgLON5, or glutamate decarboxylase (GAD), with respect to the reported basic CSF findings comprising CSF leukocyte count, total protein, and the presence of oligoclonal bands (OCB) restricted to the CSF as a sensitive measure for intrathecal IgG synthesis. Our results indicate that these basic CSF findings are profoundly different among the 10 different AE subtypes. Whereas, AEs with antibodies against NMDA, GABAB, and AMPA receptors as well as DPPX show rather frequent inflammatory CSF changes, in AEs with either CASPR2, LGI1, GABAA, or glycine receptor antibodies CSF findings were mostly normal.

Our findings suggest that different antibody-defined AE subtypes are associated with characteristic CSF findings. AE with NMDAR antibodies is the most frequent AE subtype at younger age and almost always associated with inflammatory CSF findings while anti-LGI1 AE, the most frequent AE subtype in the elderly, in the majority of patients CSF is normal. We conclude that in suspected AE in the elderly, normal basic CSF findings should not lead to the decision against testing for antineuronal antibodies. 


COVID-19 Clinician’s Corner

Postinfectious brainstem encephalitis associated with SARS-CoV-2



Case report of a postinfectious brainstem syndrome in a patient with COVID-19 who presented with generalized myoclonus, ocular flutter with convergence spasm and acquired hyperekplexia. Clinical improvement was seen following corticosteroids, highlighting this as a possible treatment in patients where post-COVID-19 autoimmune encephalitis is suspected.

Anti-NMDA receptor encephalitis 

This short article explains anti-NMDAr AE in a comprehensive way and is a wonderful read for those with the diagnosis. 

Covers, what anti-NMDAr is, how it presents when it first appears, how it is diagnosed, treatment and managed, what the differential diagnoses are to anti-NMDAR (other disorders that mimic it), prognosis and complications.


Sleep disorders in anti-NMDAR encephalitis

Objective: To describe the sleep disorders in anti-NMDA receptor encephalitis (anti-NMDARe).

Methods: Patients recovering from anti-NMDARe were invited to participate in a prospective observational single-center study including comprehensive clinical, video-polysomnography (V-PSG) sleep assessment and neuropsychological evaluation. Age and sex-matched healthy participants served as controls.

Conclusions: Sleep disturbances are frequent in anti-NMDARe. They show a temporal pattern (predominantly insomnia at onset; hypersomnia during recovery), associate with behavioral and cognitive changes, and can occur with confusional arousals during NREM sleep.


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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