George Monbiot’s recent commentary highlights a critical issue: individuals suffering from severe ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) warrant significantly improved care than what many have experienced. However, it is essential to distinguish between two separate matters: the treatment received by these patients and the scientific understanding of the condition’s causes and treatments.
The National Institute for Health and Care Excellence has discontinued its endorsement of the previous model of graded exercise therapy, which involved increasing activity levels based on a set schedule without regard for the patient’s symptoms. This revision is particularly significant in light of the challenges posed by post-exertional malaise. Nonetheless, this change does not imply that exercise is universally harmful or that all forms of physical rehabilitation lack value. Some clinical trials have demonstrated that certain exercise-based interventions can lead to improvements in fatigue and physical function for specific individuals, although these studies have notable limitations.
Moreover, cognitive behavioral therapy (CBT) should not be misconstrued as a definitive cure for ME/CFS or as a remedy for an assumed psychological origin. While CBT can assist individuals in managing anxiety, depression, or the repercussions of living with a debilitating chronic illness, this does not mean that the illness itself is rooted in psychological causes.
While the increasing evidence of biological irregularities is significant, it does not clarify whether these abnormalities are causes, effects, adaptations, or components of a feedback mechanism. The personal accounts shared by patients, as mentioned by Monbiot, deserve consideration, yet testimonials from a self-selected group responding to a social media appeal cannot definitively indicate the prevalence of specific experiences.
As a general practitioner, I believe there is a more straightforward issue that requires attention: the availability of specialized ME/CFS services is strikingly inadequate. Numerous chronic illnesses, including rheumatological and neurological disorders, lack cures, yet they benefit from specialized services that provide diagnosis, symptom management, and support.
Patients must be treated with empathy and respect, and they deserve transparency regarding the existing knowledge, uncertainties, and the actual evidence surrounding their condition.
Reflecting on my personal experience, I lived with a mild, undiagnosed variant of ME for two decades, initially triggered by a virus, before a subsequent viral infection exacerbated my condition. My otherwise attentive GP recommended daily walks, which left me so incapacitated that I struggled to leave my home for over three years.
Nearly a quarter of a century later, there are still no effective treatments for ME, and in certain regions, including my own, support is virtually nonexistent. When I first sought sickness benefits, I had to pay out of pocket to consult a specialist in infectious diseases with expertise in ME, as the Department for Work and Pensions would not accept documentation from general practitioners.
I find it impossible to make plans due to the unpredictability of my illness, which can confine me to my home at any moment. The majority of individuals I encounter have little to no awareness of ME/CFS. If we were not so severely affected, those of us enduring this debilitating illness would be vocalizing our plight far and wide.
George Monbiot effectively underscores the “shocking social crisis occurring behind closed doors” for those living with ME. This condition is not only profoundly debilitating but too frequently, those impacted are let down by the very systems designed to support them.
The level of political engagement surrounding the issue remains vastly disproportionate to the scale of the crisis. The government’s ME strategy, released over a year ago, fell short in both funding and measurable objectives. The plan’s primary action for individuals suffering from the most severe forms of ME— to investigate the possibility of establishing a specialized service— has now been postponed until April 2027. It is hoped that the health and social care select committee will prioritize this urgent matter.
—Karen Hargrave and Emma Gore-Lloyd, Co-founders, ThereForME charity
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