Neuroimmune Conference 2024 – A Reflection from Dr Tim Ubhi

As we prepare to launch the London PANS Clinic, I felt that it would be useful to reflect on the recent neuroimmune 2024 conference for parents of children with PANS PANDAS. The conference took place in Palo Alto, California (although it was virtual) and there were some significant updates with the standout presentations from Jenny Frankovitch and her team together with Russell Dale who proposed an alternative model for the pathogenesis of PANS PANDAS centred around epigenetics, ie the pattern of gene expression in different environments.

The conference started with a lecture from the UK. Professor Belinda Lennox, an Oxford based adult psychiatrist started by highlighting the cost of psychiatric disease in the United Kingdom where for example, schizophrenia costs the taxpayer £19 billion a year compared with cancer which costs £6 billion a year, that shows the very heavy financial burden that psychiatric disease has on UK taxpayers. This should also help us focus where our priorities lie in terms of research and innovation in different areas of disease. Professor Lennox commented that when a patient presents with psychiatric symptoms that they quite often do not get a brain scan, a lumbar puncture or even an EEG in many centres. This is of concern, a particular when you consider the evidence from research which shows that psychiatric symptoms can and are often associated with organic disease. And for example, in this respect, she commented on the onset of schizophrenia following stem cell transplantation and also the work on NMDA encephalitis and the association of psychiatric phenomena with cancers. All of this suggests that in certain cases, the onset of neuropsychiatric symptoms is associated with an organic disease process. Professor Lennox highlighted that early diagnosis and treatment resulted in a better outcome in this group of patients.

There were other lectures on neuroinflammation from Ming Lim and immunopsychiatry from Dominique Endres, so a good European representation.

Jenny Frankovitch and her team delivered some amazing data which confirmed that disruption of the blood brain barrier is limited to the basal ganglia in PANS PANDAS. There are 4 streptococcal vaccines in development which may modulate PANS PANDAS disease progression in the future. Interestingly, the Stanford data found that routine vaccination resulted in a flare of symptoms in 14% of patients. Every child is different but parents must consider the potential harm of getting a wild type infection compared with the risk of vaccination. This is not a debate that I am going to get into here as I understand the experiences that some families have had.
There was quite a lot of heavy science that was presented, even looking at the role of G proteins and G protein coupled receptors and PJ Utz presented data on the autoantibody profiling in PANS patients.

The conference was wrapped up with an engaging lecture from Russell Dale where he showed compelling evidence of changes in gene expression in patients with PANS PANDAS before and after treatment with IVIG. He argued that this shows that PANS PANDAS is an epigenetic phenomenon and he might be right. His stand out statement however was a call for physicians to “listen to their patients” and for PANS PANDAS to be higher up on the diagnostic algorithm for patients who present with neuropsychiatric symptoms, echoes of Sir William Osler 130 years ago?

Dr Tim Ubhi
July 2024