“Ignored and invisible”— that’s how the Chief Medical Officer’s report described the most severely ill ME/CFS patients in 2002, and still today remarkably little is known about this severely overlooked group of people (see Severe ME – what do we know?).

To examine the current situation – 12 years after the Chief Medical Officer’s report and 7 years after publication of the NICE Clinical Guideline – the Department of Primary Care and Population Science at the University of Southampton undertook an assessment of current NHS provision for severely ill patients. Their report has just been published full-text in BMJ Open; it is well worth reading in full, though it’s conclusions are depressing.

The researchers contacted all 49 English NHS specialist ‘CFS/ME adult services’ in England with a questionnaire about their methods. The main research question was how closely these units were adhering to current NICE guidelines for severe ME/CFS patients (defined as predominantly housebound or bedridden), given that these guidelines “recommend that all patients with severe CFS/ME receive specialist medical care to monitor clinical risks, and to advise on individually tailored treatment plans”.

All 49 specialist CFS/ME services replied, and – amazingly – one-third said they provided no service for housebound patients, the most common reason being lack of funding. Only 55% of services treated patients with severe illness, and their interventions followed the NICE guidelines (e.g. Activity management, graded activity, mindfulness therapy, lifestyle management, dietary advice, etc.), while the remaining services offered only occasional or minimal support. In the whole of England, there was only one NHS unit (consisting of 8 beds) providing relevant specialist in-patient provision. The average caseload per unit was 16 patients, but one unit reported having 90 patients, which most probably reflected its specific remit to offer treatment to patients with severe illness.

Interestingly, the authors raise the question of how many patients on the ground may be affected by this lack of access to specialist care. One unpublished study in 2004 identified 48 severely affected ME/CFS patients in the county of Dorset, a figure which implies 4000 similar patients across the UK (the extrapolation is not necessarily valid nor accurate, of course). By contrast, the assumption among ME/CFS charities is that between 10 and 25% of all ME/CFS patients (20,000 to 50,000 people in the UK alone) have severe illness. Sadly, no national research is available to provide an accurate estimate.

Overall, the results of this study from the University of Southampton confirm that there is still a long way to go before housebound or bedbound patients get the recognition and treatment they deserve, and this gives added urgency to our geographically defined study of severely affected ME/CFS patients being conducted at the University of Newcastle by Prof Julia Newton.