The Times
Sean O’neill
Gerry Gajadharsingh writes:
“Post-viral syndrome or ME is one of the most challenging clinical problems for both patients and their clinicians. COVID-19, as predicted, has added significantly to the number of patients suffering from post-viral syndrome.
On Monday 12th September 2022, DeCodeME, opened for registration for patients suffering from ME, who will be required to provide a saliva sample to build data and to find out if there are any genetic patterns which may help with diagnosis or potentially treatment for this debilitating clinical problem.
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ME is often also called post -viral syndrome, in the vast majority of cases patients develop symptoms post viral infection, COVID 19, being no exception.”
A scientific mission to find the genetic signal to one of the world’s most puzzling medical conditions begins today.
British researchers are inviting thousands of people with myalgic encephalomyelitis (ME) to provide DNA samples for analysis to identify the minute differences that make them susceptible to the debilitating illness.
At least 250,000 people in the UK have ME, which affects about 2½ times as many women as men. The great majority of cases develop after a viral infection, rendering about a quarter of patients housebound or bedbound. It is fatal in extreme cases and there is no known treatment or diagnostic test.
The £3.2 million DecodeME programme, funded by the Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR), is seeking 20,000 samples from people diagnosed with ME.
People can register and will be sent “spit kits” to submit saliva samples.
A further 5,000 people diagnosed with ME after having Covid-19 will be asked for samples to examine any differences between cases triggered by Covid and those pre-dating the pandemic.
Research will also be carried out to see if there are common factors with other neglected post-viral illnesses such as fibromyalgia. “We are asking if there is a common DNA difference between people with ME and the rest of the population,” said lead researcher Chris Ponting, principal investigator at the MRC Human Genetics Unit at Edinburgh University.
“Genome-wide association studies like DecodeME have proved successful in helping to uncover the biological roots of other complex diseases, including type 2 diabetes and Alzheimer’s. Any differences we find compared to control samples will serve as important biological clues.” He said the results “should help identify genes, biological molecules and types of cells that may play a part in causing ME”.
People with ME experience a range of symptoms including profound exhaustion, gastrointestinal problems, dizziness, pain and headaches, but have long complained the illness is dismissed by medical professionals who insist it is all in the mind.
The picture is changing, however, and last year the NIHR issued new treatment guidelines recognising ME as a complex long-term condition that could be profoundly disabling.
Sonya Chowdhury, chief executive of the charity Action for ME, said patients “with lived experience” of the illness were “at the very heart of the DecodeME project”, adding: “Their involvement has been so transformational that we believe it sets a new standard for health research in this country.”