Background and aim

Around 10 to 25% of ME/CFS patients are reported to be housebound or bedbound, yet we still understand very little about the origin and outcome of their severe illness. We know, however, that severe illness predisposes patients to secondary medical conditions; that the prospects for recovery tend to be worse for those most severely affected; and that the cumulative impact of severe illness over many years, where there is no sense of improvement, can be profound. Because of all this, it is astonishing that the most basic clinical and experimental scientific work has not been carried out on this important subgroup of people with ME/CFS (discussed more fully in our essay, Severely Overlooked by Science).

Prof. Newton and colleagues at Newcastle University are leaders in the assessment of autonomic nervous system dysfunction in a range of diseases, and since 2006 they have received 6 project awards from ME Research UK to advance our understanding of ME/CFS. In an impressive series of scientific papers, they have uncovered a range of biological anomalies, and their main finding has been that autonomic nervous system dysfunction contributes significantly to the symptom burden and quality of life of ME/CFS patients, affecting standing, blood pressure regulation, muscle function and cognition. Their research culminated in an award from the Medical Research Council to explore the relationship between autonomic nervous system impairments and the neurocognitive symptoms (including deficits in memory and attention) which are some of the most frequent and disabling symptoms associated with ME/CFS.

For many years, ME Research UK and Prof Newton have been concerned about the chronic lack of research interest into severe ME/CFS, and the serious void that exists in the scientific knowledge-base about this group of patients. So, when ME Research UK awarded a large programme grant to the researchers in Newcastle in 2014 (photo), it was decided to initiate a specific project investigating housebound or bedbound individuals who are unable to attend clinics or take part in research projects (which often require hospital attendance and multiple visits).

The two-year project will be conducted day-to-day by the newly funded ME Research UK Research Associate, and will involve:

  1. Identification of severely affected ME/CFS patients from records of the Newcastle Clinical Service, local patient support groups including ME North East, and national registers or other sources. This will give an indication of how common severe ME/CFS is in this particular area of North-East England, and identify specific patients to be included in the investigation.
  2. Home visits on patients. During each visit, the ME Research UK Research Associate will undertake a series of specific assessments, including:
    • Recording of demographic information, such as length of illness, mode of onset, provision of social care, receipt of benefits etc.
    • Autonomic testing at rest to gauge the presence of autonomic nervous system dysfunction, which features prominently in ME/CFS patients generally.
    • ME and CFS diagnostic criteria assessment, using the DePaul Symptom Questionnaire in collaboration with Prof. Leonard Jason at De Paul University in Chicago.
    • Neurocognitive testing (e.g. memory, concentration and executive function) using software-based tools, since neurocognitive symptoms are some of the most common and worrying for ME/CFS patients.
    • Assessments of muscle strength, using dynamometer and manual physical techniques.
    • Activity monitoring using a 24-hour actimeter.
    • Asessment of symptoms, including information from sleep and activity diaries.
    • Recording of patients’ own experience of illness and treatment, and the impact of the disease.

This aim of this exploratory study is to raise the curtain on this severely overlooked group of patients, defining their clinical characteristics, gauging the level of unmet clinical need, and determining the relationship, if any, between autonomic nervous system dysfunction and other clinical variables. Subsequent progress will depend on what these investigations uncover and where the science leads. Crucially, however, a start will have been made on the serious scientific investigation of housebound and bedbound people with ME/CFS.

ME Research UK trustees unveil a plaque marking the award  of a Programme Grant to the University of Newcastle, May 2014

ME Research UK trustees unveil a plaque marking the award of the Programme Grant to the University of Newcastle, May 2014

Severe ME/CFS – what do we know?

Ignored and invisible! When the authors of the Chief Medical Officer’s report coined that phrase in 2002 they were referring to the exclusion of the most severely ill people with ME from community and social care provision. But the same description also holds true for mainstream scientific research. The scientific literature on ME/CFS contains around 6,400 publications, but vanishingly few focus on severely affected patients, who are “ignored and invisible” by science as well. So, what do we know about this important group of ME/CFS patients?

It’s thought that between 10 and 25% of patients have severe ME/CFS – housebound, bedbound or immobile. However, the real proportion may be higher: in a members survey by Action for ME in 2000, 34% described themselves as severely affected. This means that they can be counted in thousands in the UK and in millions worldwide – though their voices are rarely heard.

The consequences of severe illness are also severe. In 2002, the Chief Medical Officer’s report made clear that severe physical disability with serious mobility restrictions has “profound effects on personal and social functioning, which in turn substantially affects the patient’s ability to access health and social services… These patients suffer from additional problems of invisibility, barriers to accessing all forms of care, variable responses to treatments, and under-representation in research.

Prospects for recovery are almost certainly worse for the severely affected than for other mobile, functioning patients, whether adults or children. Apart from anything else, the cumulative impact of any severe chronic illness, such as rheumatoid arthritis, MS or ME/CFS, can be profound.

No specific treatments are available. The NICE Guideline of 2007 stated that patients’ symptoms can be just as “disabling as multiple sclerosis… congestive heart failure… and other chronic conditions”, yet it could offer little guidance on the specific care of patients with severe ME/CFS, other than to say that management is “difficult and complex, and that healthcare professionals should recognise that specialist expertise is needed”.

Biomedical research studies on severe ME/CFS are extremely rare, so we know very little about the biomedical basis of severe illness or its long-term consequences.

Surveys of severely ill patients by the 25% ME Group and Action for ME show that:

  1. More than half are unable to attend their GP surgery, yet only a minority of these ever get a GP home visit.
  2. One-third waited longer than 18 months for formal diagnosis.
  3. Many feel suicidal because of their illness.
  4. The overwhelming majority suffer severe pain.
  5. Around one-third use a wheelchair.
  6. Many say that psychological strategies, such as cognitive behavioural therapy or graded exercise, have not helped or have worsened their condition.
  7. Improvements in health can occur – but over time.

For further information, the late Emily Collingridge’s book, Severe ME/CFS: A Guide to Living, is a good reference point for people with severe ME, their loved ones and professionals caring for them. Also, the film, Voices from the Shadows, is a moving documentary about severely ill ME patients. And please remember that 8th August each year is ‘Severe ME – Understanding and Remembrance Day’, when patients, carers, families and charities undertake events to raise awareness of severe ME and the plight of people with disease, many of whose stories remain untold.