The Flett family from Flotta, Orkney, are central to a Viking Genes study into a suspected inherited muscle-and-nerve condition affecting six generations. After whole-exome sequencing ruled out known coding variants, the team aims to fund whole-genome sequencing to find structural or non-coding changes that could explain the condition and improve understanding of neuromuscular disease in Orcadian families. “Flett fae Flotta” (Flett from Flotta) is a well‑known 4/4 march composed by Pipe Major Donald MacLeod. The tune, memorable for its simple major‑key melody, is named after William Arnot Flett (pictured in 1942), a soldier from Flotta, one of the Orkney Islands.Flett served with the Seaforth Highlanders, as did MacLeod. According to the story, the tune was composed during a 1940s train journey from Inverness to London while the two were guarding regimental silver. Passing time by playing their practice chanters, they decided to write a tune together; MacLeod then used Flett’s name and home island as its title.Alternative versions of the tale suggest the march imitates Flett’s distinctive walking gait, which may be a tantalising clue as to why Professor Jim Flett Wilson was contacted in 2023 by Stuart and Chloe Flett. In 2024, the Viking Genes (Wilson Group) began studying the Flett family from Flotta (Orkney) with a suspected inherited muscle-and-nerve condition. The first family member assessed was diagnosed with neuromyotonia, a very rare condition that can cause severe cramps, muscles that are slow to relax after movement, and enlarged muscles. Across at least six generations, relatives have received diagnoses including motor neurone disease, multiple sclerosis and Parkinson’s disease, and others have had similar symptoms, often starting in the teenage years. The team suspects these may all be different labels for the same underlying inherited genetic cause. Sixteen family members were whole-exome sequenced through Viking Genes. A symptoms questionnaire, reviewed by a consultant neurologist, was completed by thirteen relatives. The team used two approaches side by side: (1) looking for rare genetic variants that were present in affected relatives but not in unaffected relatives, and (2) carrying out parametric linkage analysis to pinpoint chromosome regions that affected relatives are likely to share because they inherited them from the same ancestor (identical-by-descent). The variant analysis ruled out known pathogenic coding variants in genes previously associated with neuromyotonia and related neuromuscular conditions. The results suggest that the genetic cause is likely a type of variant that is not captured by standard whole-exome sequencing, so further analysis is required. The next steps are to raise enough funds so additional family members, some who display many symptoms, and other closely related individuals who have no symptoms (but also contribute to the ability to detect genetic signals), can be whole-genome sequenced. This will focus on the linked regions and look for structural and non-coding variants across the genome. If a causal variant is identified, Viking Genes can screen for its presence among the approximately 4,000 individuals of Orcadian heritage recruited in Viking Genes, potentially identifying additional affected individuals, and contributing to our understanding of neuromuscular disease in this population. Read Stuart Flett's powerful story on living with neuromyotonia To support our research into Flotta Myotonia, please donate to the Orkney Fund This article was published on Wednesday 2 September 2026
