Readers have responded to George Monbiot's article on the failures faced by people with myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), highlighting the need for improved specialist care and a clearer understanding of the evidence.
Distinguishing treatment from evidence
One GP reader agreed that people with severe ME/CFS deserve better care but argued that two separate questions are being conflated: how patients have been treated, and what the evidence says about causes and treatment.
The National Institute for Health and Care Excellence no longer recommends the old form of graded exercise therapy, in which activity was increased according to a predetermined schedule regardless of symptoms. This change is important, particularly given the significance of post-exertional malaise, but it does not establish that exercise is inherently dangerous or that all forms of physical rehabilitation are useless. Clinical trials have found improvements in fatigue and physical functioning in some people following exercise-based interventions, albeit with important limitations.
Honesty about what is known
Cognitive behavioural therapy should not be presented as a cure for ME/CFS or treatment for an assumed psychological cause, the GP added. However, helping someone manage anxiety, depression or the consequences of a disabling chronic illness does not imply the illness itself is psychological.
The growing evidence of biological abnormalities is important, but it does not establish whether individual abnormalities are causes, consequences, adaptations or part of a feedback loop. While Monbiot's patient testimonies deserve attention, a self-selected group responding to a Bluesky appeal cannot establish how common particular experiences are.
The GP noted a simpler failure to address: specialist ME/CFS provision remains remarkably limited. Many chronic conditions, including rheumatological and neurological illnesses, have no cure but still have specialist services for diagnosis, symptom management and support. Patients deserve to be believed and treated with respect, as well as honesty about what is known, what is uncertain and what the evidence actually shows.
Personal experiences of ME
Eleanor Dent from Cardiff described having a mild undiagnosed form of ME for 20 years, triggered by a virus, before another virus worsened her illness. Her GP advised her to go for a walk every day, which left her so ill that she barely left the house for more than three years.
Twenty-four years later, there are still no treatments for ME, and in some places, such as where she lives, there is no support at all. When she first claimed sickness benefits, she had to pay privately to see a consultant in infectious diseases with a special interest in ME because the Department for Work and Pensions would not accept evidence from GPs. She cannot plan anything, as she never knows when she will be too ill to leave the house again, and most people she speaks to have never heard of ME/CFS.
Political attention and charity response
Karen Hargrave and Emma Gore-Lloyd, co-founders of the ThereForME charity, agreed with Monbiot's attention to the “shocking social crisis playing out behind closed doors” for people living with ME. They said the level of political attention the issue has received is nowhere close to the scale of the problem.
The government's strategy on ME, published over a year ago, lacked both substantive funding and outcome targets. Its key action for those affected by the most severe form of ME – “exploring” whether a specialised service could be commissioned – is now delayed until April 2027. They hope that, as a first step, the health and social care select committee will take up this critical issue as a matter of urgency.
