Thousands living with chronic illness ME are listened to after years of fighting to be heard

After 14 years of recommending graded exercise therapy to people with myalgic encephalomyelitis (ME), the National Institute for Health and Care Excellence (NICE) has removed this harmful treatment from its new guideline on ME/CFS, released today. Sian Leary, spokesperson for #MEAction UK, highlights the importance of the new guideline: “This is a huge step for people with ME. Finally science is winning over stigma and paternalism in healthcare, and we can move towards better care for the thousands living with this devastating disease.”

People with myalgic encephalomyelitis (ME) have been in a battle to get rid of a very harmful practice known as graded exercise therapy that has worsened the condition of thousands of patients.

The guideline’s publication in August was delayed by NICE due to concerns raised by several Royal Colleges. Following a roundtable meeting with a range of patient and professional organisations to discuss the concerns, NICE announced that they would publish the guideline, and were confident that it would be effectively implemented.

ME is one of the most underfunded and under-researched illnesses, despite it affecting millions of people around the world. 80% of ME is post-infectious, meaning that individuals get a virus or a bacterial infection and never recover. The number of people being diagnosed with ME is increasing due to the recent COVID-19 pandemic, so there is all the more reason to get rid of harmful treatments immediately.

The key symptom of ME is post-exertional malaise (PEM), which means that overexertion causes a serious flare of symptoms that in some cases can last months or even years. Patients prescribed graded exercise therapy are encouraged to continually increase their levels of exercise, regardless of the effect this has on their health. Many describe being ignored or told to push through it — with tragic consequences.

After 14 years of advising doctors to recommend graded exercise therapy to people with ME, NICE has issued a new guideline on ME/CFS which advises against any programme “that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy”. #MEAction UK and other patient advocacy organisations across the world have been fighting for this removal for many years, and the hard work has finally paid off.

Rachel Elliott, whose daughter has very severe ME, describes her feelings on reading the guideline: “I am thrilled NICE has finally removed graded exercise therapy from the guideline. I am so relieved that other people with ME will be protected from being subjected to potentially devastating and lasting harm from this ‘treatment’ which caused my daughter to become severely affected. She remains bedbound 7 years later, and has been tube fed for the last 4 of these.”

Sian Leary, spokesperson for #MEAction UK, comments, “It’s appalling that so many have had to suffer for so long, but a relief that no new patients should suffer further because of discredited recommendations. That’s why spreading this news far and wide and getting the guideline into the hands of GPs is of paramount importance. We can prevent further damage if GPs know and understand this new guidance.”