Severe ME – the missing 25%

On Severe ME Awareness Day 2022, we look at some of the problems faced by this particularly overlooked group of ME/CFS patients, and what we might do to improve the situation.

The Inverse Care Law (proposed by Julian Tudor Hart in the 1970s) suggests that the people most in need of good medical care often get the least or worse care. Such a law may well apply to people living with ME/CFS, who have struggled to get doctors to recognise the condition and offer medical care and support. Worst of all, those people afflicted by severe ME/CFS may be the least served of all ME/CFS sufferers.

The recently updated 2021 NICE guideline for ME/CFS states that, in addition to the common symptoms of ME/CFS, people living with severe or very severe ME/CFS may experience a number of other problems, among them:

  • constant pain (either muscular, arthralgic or neuropathic);
  • hypersensitivity to light, sound and other stimuli;
  • extreme weakness;
  • a reduced ability to speak or swallow;
  • cognitive difficulties that can limit communication; and
  • orthostatic intolerance and autonomic dysfunction.

A survey on the needs of adults with severe ME/CFS in the UK (conducted by Dr Geraghty and colleagues at the University of Manchester, and included in the NICE guideline appendix 2) found that those at the severe end of the ME/CFS spectrum have complex and challenging health and social care needs, but are often unable to get home care visits, often have to miss hospital appointments, struggle with basic needs, and often require care support from family members or professional care assistants.

Furthermore, ME Research UK-funded work by Victoria Strassheim and colleagues at Newcastle University found that severe ME/CFS patients were some of the hardest to reach in research, many being housebound and unable to travel to clinics for testing. This helps explain why people with severe ME/CFS are often not included in treatment trials or clinical studies.

A recent paper by Helen Baxter of the 25% Group – a charity dedicated to advocating on behalf of those most severely affected by ME/CFS – offers guidelines on how researchers could include their members in future research. These include adapting research methods, training scientists and health care professionals about the specific needs of severe sufferers, being able to visit patients at home, and the need for light and noise awareness.

A truly compassionate society is one that seeks to alleviate suffering. People living with severe ME/CFS deserve all the assistance and support that science, medicine and society has to offer. Improving the lives of people living with severe ME/CFS will require educating doctors and allied health professionals about the realities of the illness.

Applying the Inverse Care Law, those sufferers with severe ME/CFS should perhaps be the very patients doctors should seek to understand and care for.

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