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 and CFS contains around 6,400 publications, but vanishingly few focus on severely affected patients, who are “ignored and invisible” by science as well  (discussed more fully in our essay, Severely Overlooked by Science). So, what do we know about this important group of ME patients?

It’s thought that between 10 and 25% of patients have severe ME – 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, 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, 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 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.

ME has many different names – postviral fatigue syndrome, ME/CFS, chronic fatigue syndrome, chronic fatigue immune dysfunction syndrome etc. Yet, whatever the name, the quality of life of patients can be poor, and most endure long-term chronic illness.

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.

[image credit: Loy Krathong festival, courtesy of ‘Takeaway’]