{"id":429813,"date":"2026-05-16T00:38:25","date_gmt":"2026-05-16T00:38:25","guid":{"rendered":"https:\/\/www.newsbeep.com\/nz\/429813\/"},"modified":"2026-05-16T00:38:25","modified_gmt":"2026-05-16T00:38:25","slug":"landmark-me-study-will-map-patients-dna-in-mission-to-find-cure","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/nz\/429813\/","title":{"rendered":"Landmark ME study will map patients\u2019 DNA in mission to find cure"},"content":{"rendered":"

Thousands of patients suffering from chronic fatigue syndrome are to have their full genetic codes mapped in an attempt to find a cure for the debilitating and mysterious illness.<\/p>\n

The study, a world first for the syndrome also known as myalgic encephalomyelitis (ME), will be funded by an investment of \u00a34.75 million from the government in the hope that it will lead to a test to reliably identify the illness and eventually develop drugs to treat it for the first time.<\/p>\n

The programme will also ultimately aim to do the same for people suffering from long Covid as well as attempting to understand its causes and whether it is linked to ME.<\/p>\n

ME, which affects more than 400,000 people in the UK, causes debilitating fatigue, sleep difficulties and cognitive impairment.<\/p>\n

It was formally identified by doctors in the 1950s although there have been recorded cases going back to the 19th century. Scientists believe ME is triggered by viral infections resulting in changes to a person\u2019s immune system but still have no clear idea exactly how it is triggered or how it can be best treated.<\/p>\n

The latest study follows a breakthrough by British scientists<\/a> last year that discovered the condition is likely to have genetic roots. This initial stage of the study was called DecodeME and was a \u201cgenome-wide association study\u201d that examined about a million locations within the human genome where DNA variants are commonly found.<\/p>\n

It compared the DNA of 15,579 people with ME compared with the DNA of 260,000 people who did not have the illness, finding eight \u201csignals\u201d within distinct regions of genetic code that showed a significant difference. This provided the first robust evidence that some people may be genetically predisposed to the syndrome.<\/p>\n

Some of these regions were related to the triggering of the body\u2019s initial response to infection, while another has been linked to chronic pain.<\/p>\n

The next stage of the study is to be called SequenceME and will create a detailed map of the entire genome of 6,000 people with ME, looking not at one million locations but at the entire three billion letter code.<\/p>\n

While the first part of the study was able to show that people can be genetically predisposed to ME, the new phase will allow scientists to pinpoint which specific genes are linked to the syndrome.<\/p>\n

The programme has been hailed as a breakthrough after decades of struggle to correct the misconception in medicine that ME is a behavioural or psychological disorder. There are still no proven effective treatments for a condition that can leave people bedridden and can, in the most severe cases, be fatal.<\/p>\n

The Times has highlighted the inadequate care that many ME sufferers receive from the NHS, such as in the case of Maeve Boothby O\u2019Neill<\/a>, who died in 2021 aged 27 from malnutrition caused by severe ME. The coroner at the inquest into her death issued a prevention of future deaths report and said that the NHS must urgently address the \u201cnon-existent\u201d care available to ME sufferers.<\/p>\n

Dr Charles Shepherd, a medical adviser for the ME Association, said: \u201cFor people with ME\/CFS [chronic fatigue syndrome] there is now real hope that we have a route to finding a much-needed diagnostic biomarker blood test and effective forms of treatment.\u201d<\/p>\n

Sonya Chowdhury, chief executive of Action for ME, said: \u201cSequenceME will enable us to unlock deeper genetic insights that could accelerate much-needed diagnostics and treatments. People with ME and ME-like symptoms have been neglected for decades and while this funding is very much welcomed, it is nowhere near enough to bring ME research on a par with other illnesses.\u201d<\/p>\n

Dr Zubir Ahmed, health innovation and safety minister, said that the government was determined to diagnose and medical treatments. He said: \u201cBritish scientists are leading the world in genomic research and through this world-first genomics study we are giving them the tools they need to understand the biological causes of this illness, laying the groundwork for better diagnostics and new treatments that hundreds of thousands of patients deserve.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"Thousands of patients suffering from chronic fatigue syndrome are to have their full genetic codes mapped in an…\n","protected":false},"author":2,"featured_media":429814,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[34],"tags":[134,527,111,139,69],"class_list":["post-429813","post","type-post","status-publish","format-standard","has-post-thumbnail","category-healthcare","tag-health","tag-healthcare","tag-new-zealand","tag-newzealand","tag-nz"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/429813","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=429813"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/429813\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/429814"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=429813"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=429813"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=429813"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}