The outbreak at the Royal Free acted as the spark which ignited research interest into the mystery illness. Following the outbreak in 1955, the evolution of studies and recognition of the disease grew and nurtured lifelong interest for some – such as the work of Dr Melvin Ramsay (a member of the Royal Free’s Infectious Diseases department) – who alongside a handful of British medical doctors, diagnosed and treated people with ‘ME’, and became leading advocates of the need to recognise, diagnose, investigate and treat the disease (notable others include Dr Gordon Parish, Dr John Richardson, and Dr Betty Dowsett).
Myalgic encephalomyelitis – a muscle/brain disorder
To Dr Parish, ‘myalgic encephalomyelitis is a muscle/brain disorder, which occurs as clusters of cases in families, in institutions such as hospitals or schools, and in specific areas, but also sporadically.’ Dr Parish was one of the group of trustees who founded ME Research UK (originally called MERGE) in 2000, becoming a valued patron thereafter. Without his intellectual and financial support, particularly in the very early days, the charity would not have survived and prospered.
A number of findings from research funded by ME Research UK align with Dr Parish’s theory that ME/CFS is a muscle/brain disorder. For example:
- In 2020, Dr Cara Tomas found that muscle cells from people with ME/CFS are less able to use glucose as a fuel to produce energy.
- In 2023, Dr Kieran Thapaliya identified that people with ME/CFS (and those with long COVID) had larger than normal volumes of several areas of the brainstem compared with healthy controls.
ME Research UK continues to fund research into the brain and nervous system – such as that by Associate Professor Leighton Barnden’s team, and into muscle function and metabolism – including work from Associate Professor Rob Wüst and colleagues.
‘Persistent virus infection’
To Dr Ramsay, ME was a ‘persistent virus infection’ and as such there is no need for ‘biological’ proof of brain damage (Letter 18th December 1986 (unpublished)). The idea that a persistent viral infection may lead to ME/CFS remains today. Work – including that funded by ME Research UK and carried out by Dr Amy Proal, and by Prof Bupesh Prusty – continues to investigate how pathogen reactivation may lead to ME/CFS.
The importance of accurate case definitions
In 1986 Ramsay published the first case definition of ‘ME’ in his book Postviral Fatigue Syndrome: The Saga of Royal Free Disease. In the second edition of which (now renamed Myalgic Encephalomyelitis and Postviral Fatigue States: The Saga of the Royal Free Disease, (available via the ME Association; a charity he founded), he named three features of the disease: “(1) muscle fatiguability after minimal exertion and a delay in the restoration of muscle power; (2) cerebral dysfunction, and (3) impaired circulation”.
Since the Ramsay case definition for ME was published, there have been more criteria developed for ME, for ME/CFS, and for CFS. Although the different criteria require different symptoms for diagnosis, the terms “ME”, “ME/CFS”, “CFS”, are used interchangeably in research limiting the comparisons that can be made between studies. The development of the first case definition by Ramsay highlights the importance of using accurate definitions, and consist terminology when researching the disease.
Ongoing misconception that ME/CFS is psychological in nature
A devastating consequence of the Royal Free outbreak was the paper published by McEverdy and Beard in 1970, and the continued impact this paper has had on medical practice, public perceptions of the disease, and on research funding.
Although the paper has now been refuted on many occasions – including the immediate response from Drs Ramsay, Dinsdale, Compston and Richardson, and more recently in a paper by Waters and colleagues, published in 2020, which identified that when re-evaluated, the results of McEvedy and Beard’s paper were “….. mathematically incorrect” – many people still hold the erroneous view that ME/CFS is psychological in nature.
This view has delayed understanding of ME/CFS, contributed to the stigma and bias that still exist today, and led to the chronic underfunding of research into the disease.
Need for high-quality biomedical ME/CFS research
The gaps in knowledge at the time of the outbreak at the Royal Free highlight how important high-quality research – which uses the best available methods – is when it comes to understanding the causes and consequences of a disease, particularly one as complex as ME/CFS.
Therefore, ME Research UK is committed to funding high quality biomedical ME/CFS research, and to supporting researchers – particularly those at the early stages of their careers – working on the studies we fund to develop the skills required to be successful in securing grants for larger studies into the disease.
This progression underpins ME Research UK’s approach – from PhD level through to project grants – and the charity believes that a sustainable ecosystem of biomedical research is needed to understand the causes and consequences of ME/CFS, and to discover an eventual treatment/cure.
