Specialist services are vital to help people with ME/CFS | Letter

George Monbiot (Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed, 24 September) is right about one important thing: people with severe ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome) deserve much better care than many have received. But two different questions are being conflated: how patients have been treated, and what the evidence tells us about the causes and treatment of ME/CFS.

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.

That is an important change, 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.

Similarly, cognitive behavioural therapy should not be presented as a cure for ME/CFS or treatment for an assumed psychological cause. But helping someone manage anxiety, depression or the consequences of a disabling chronic illness does not imply that the illness itself is psychological.

The growing evidence of biological abnormalities is important, but does not establish whether individual abnormalities are causes, consequences, adaptations or part of a feedback loop. Monbiot’s patient testimonies deserve attention, but a self-selected group responding to a Bluesky appeal cannot establish how common particular experiences are.

As a GP, I believe that there is a much 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. They also deserve honesty about what is known, what is uncertain and what the evidence actually shows.
Name and address supplied

I had a mild (undiagnosed) form of ME for 20 years, triggered by a virus, before another virus caused my illness to worsen. My otherwise excellent GP advised me to go for a walk every day, which left me so ill that I barely left the house for more than three years.

Twenty-four years later, not only are there no treatments for ME but in some places, such as where I live, there is no support at all. When I first claimed sickness benefits, I had to pay privately to see a consultant in infectious diseases with a special interest in ME as the Department for Work and Pensions would not accept evidence from GPs.

I cannot plan anything, as I never know when I will be so ill that I will be confined to the house again. Most people I speak to have never heard of ME/CFS. If we weren’t so ill, those of us with this awful disease would be shouting it from the rooftops.
Eleanor Dent
Cardiff

George Monbiot is right to draw attention to the “shocking social crisis playing out behind closed doors” for people living with ME. Not only is ME a devastating condition, but too often those affected are failed by the very systems meant to care for them.

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. We hope that, as a first step, the health and social care select committee will take up this critical issue as a matter of urgency.
Karen Hargrave and Emma Gore-Lloyd
Co-founders, ThereForME charity