By Lew Gray
Acute Flaccid Myelitis (AFM) has gradually spread from the USA to the UK and Europe, with cases starting to be recognised as different from transverse myelitis (TM) in 2014. Like in the USA, outbreaks in Europe seem to occur in small geographic clusters in late summer of even-numbered years 2014, 2016, and 2018. The UK government (Public Health England) has set up a working group to identify AFM cases, confirm diagnoses and recommend best treatments.
Birkdale Rehabilitation Clinic in West London, a long-time specialist in adult and pediatric TM, has led the way in adapting physio techniques like functional electrical stimulation (FES) for infants and children with AFM. Working with Kerry Wilkinson, one of the first AFM parents from Gloucester, Birkdale organised an AFM Parents Day on February 1, 2020. This was an opportunity for parents of children with AFM to meet each other in a group, ask questions and hear from experts in AFM. The Parents Day was well attended, with 24 attending, including visitors from the Netherlands and Spain.
The UK TM Society sponsored the AFM Parents Day. Videos were made of the five presentations, and these are now available in SRNA’s Resource Library and on SRNA’s YouTube channel in the UK AFM Parents Day playlist.
Dr. Ben Greenberg from UT Southwestern in Dallas, TX was the principal speaker. Dr. Greenberg was in the UK at the invitation of the British Association of Paediatric Neurologists to speak on AFM at their annual meeting in Belfast. For anyone who wants to understand AFM, which primarily affects children, was first identified in the USA in 2014, and is now seen in Europe, Dr. Greenberg’s presentation is an excellent summary of AFM and is recommended for all.
Dr. Greenberg was followed by Dr. Julia Stowe from Public Health England (this is the UK government’s equivalent of CDC in the USA). She described the work PHE has done, setting up a working group on AFM and trying to improve diagnosis and reporting of new cases in England and Wales. There are now over fifty confirmed AFM cases in the UK. Dr. Ming Lim from Evelina Children’s Hospital in London then spoke as a clinical neurologist. Dr. Lim stressed that the flaccid paralysis from AFM could be long-lasting, but there is also potential for recovery long after the diagnosis.
Mr. Tom Quick, a neurosurgeon from the Royal National Orthopedic Hospital in Stanmore, spoke on the application of established nerve transplant surgery techniques for AFM. He mentioned that sensory nerves were almost 100% normal in cases of AFM (in limited experience), so surgery could be limited to efferent nerve pathways. He also spoke of the need to develop AFM-specific outcome measures for nerve transplant surgery.
Another neurosurgeon, Ms. Lisa Atkins from John Radcliffe Hospital in Oxford, then spoke about her collaboration with the National Spinal Injury Centre at Stoke Mandeville and US neurosurgeon Dr. Mitch Seruya from Los Angeles, to adapt nerve transplant surgery for AFM. Ms. Atkins has now performed three AFM surgeries in 2019, which are currently being evaluated at NSIC for outcomes.
Mrs. Farshideh Bondarenko, founder and principal of the Birkdale Clinic, then spoke of the particular rehabilitation challenges posed by AFM and various techniques Birkdale Clinic has been applying. Illustrated with plenty of photos and videos of practical rehabilitation, this long final session was valuable for all the AFM parents.