Respect for M.E.
For too long misunderstandings and misinformation have had a negative impact on public perception of ME (myalgic encephalomyelitis). This is reflected in the poor standard of mainstream journalism around ME, and the lack of general knowledge about the illness held by practising clinicians. Although ME is far from 'solved', as with many comparable illnesses, there is emerging evidence which supports our understanding.
Respect for ME aims to connect people with the very best scientific and biomedical knowledge around the illness, as well as important emerging science from around the world. Respect for ME also aims to undo the myth of ME as 'medically unexplained' or a 'mystery illness' by raising awareness of the huge body of research that already exists. The narrative of ME as 'baffling', 'unexplained' or 'contentious' is a self-fulfilling prophecy.
Finally, we wish to act as a loudspeaker for patient voices despite the presence of those who would erase or rewrite our experiences for their own gain. We believe in the adage 'No decisions about us without us' and we resist the appropriation of agency and the silencing of our voices that all too often occurs. The patient voice offers authenticity of experience and should not be ignored.
Respect for M.E. was founded November 2017 by Adam Lowe, a writer, publisher and educator with ME. He was tired of people with vested interests claiming to speak on patients' behalf, and with how blithely the media copies press releases on poor science when it comes to ME.
What is ME?
Myalgic encephalomyelitis (ME) is a complex chronic illness that affects the immune, endocrine, gastrointestinal, autonomic, vascular and neurological systems. It is listed as a neurological condition by the World Health Organisation and, by definition, excludes psychiatric fatigue (also known as 'neurasthenia').
The name was created in 1956 to refer to the Royal Free Disease outbreak of 1955, and means 'muscle pain (myalgic) with brain (encephalo-) and spinal cord (-myel) inflammation (itis)'. That name was deemed more accurate than 'epidemic neuromyasthenia', as not all cases were epidemic and 'neuromyasthenia' is too similar to 'neurasthenia'.
Though the 'E' part is currently debated ('encephalomyelitis' refers to the kind of injury seen in MS; thus 'encephalopathy' may be technically more accurate), it has historic significance (like 'malaria', which means 'bad air'). Key criteria include the International Consensus Criteria, Canadian Consensus Criteria (which calls the disease 'ME/CFS'), London Revised criteria, Westcare criteria, Nightingale criteria and Ramsay criteria.
The name chronic fatigue syndrome is defined as a collection of symptoms in the presence of long-term, unexplained fatigue, and overlaps with, but isn't exactly the same as, ME. Criteria include Fukuda, Holmes and Oxford.
SEID is a third label, which is more dignified than CFS, and uses a streamlined set of criteria which appear to be based on the Canadian Consensus Criteria but with fewer required symptoms (immune and overtly neuro-muscular symptoms are not required). The SEID criteria may be easy for GPs to use, although the name itself has not been widely accepted, and research indicates it may not select the same patient population as other criteria.
Research suggests that different labels and criteria emphasise different things, and may diagnose different patient cohorts.
An older term, post-viral fatigue syndrome (PVFS), is suggested for ME-type symptoms that are not yet 'chronic' (i.e., present for less than six months).