What is ME/CFS?
Most doctors now accept that PVFS/ME/CFS is a genuine, disabling, and long-term medical condition – although more needs to be done to ensure that every patient is treated appropriately and afforded the respect they deserve.
- PVFS = Post-Viral Fatigue Syndrome
- ME = Myalgic Encephalomyelitis/Encephalopathy
- CFS = Chronic Fatigue Syndrome
Draft NICE Guideline ME/CFS (2020/21)
The National Institute for Health and Care Excellence (NICE) produced a draft of the new clinical guideline on 10 November 2020. This could be a positive development that leads to better health and social care when it is published 18 August 2021.
The guideline is likely to be accepted by the devolved nations in the UK although they may choose to implement the recommendations differently.
This important development comes as a direct result of many years of hard work by the ME Association, other charities, organisations, and patients. It overturns several key recommendations in the existing guideline that the ME Association had serious concerns about.
1.11.1 Be aware that ME/CFS: is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is unclear, can have a significant impact on people’s (and their families and 8 carers’) quality of life, including their activities of daily living, family life, social life, emotional wellbeing, work, and education,affects each person differently and varies widely in severity – in its most severe form it can lead to substantial incapacity, is a fluctuating condition in which symptoms can change unpredictably in nature and severity over days, weeks or longer – ranging from being able to carry out most daily activities to severe debilitation. Draft NICE Clinical Guideline ME/CFS – November 2020
World Health Organisation
The World Health Organisation (2019) International Classification of Diseases (ICD 10) is an important classification index that the UK has adopted.
ICD 10 includes PVFS/ME in section IV as a ‘disease of the central nervous system’ i.e., a neurological disorder, under the sub-category, ‘other brain disorders’ (G93.3).
While CFS is not classified as a distinct clinical entity, it is indexed in the ICD to section G93.3.
ICD 11 has now been approved and will be put into effect on 01 January 2022. It also lists ME/CFS as a neurological disease in ‘other disorders of the nervous system, section 8E49.
ME/CFS is a “…serious, chronic, complex, systemic disease that can profoundly affect the lives of patients.”American Institute of Medicine 2015
SNOMED-CT, the NHS electronic classification system, has adopted the WHO ICD listing of ME/CFS and includes the condition as an example of neurological disease for patient records and data compilation.
NHS England also recognises ME/CFS as a long-term neurological condition.
The Department of Health officially recognises ME/CFS to be a “debilitating and distressing condition” (House of Commons Debate, 13 November 1991, col. 582W) and “accepts this [World Health Organisation] classification and recognises CFS/ME as a neurological condition of unknown origin” (House of Commons Debate, 11 February 2013, col. 517W).
There have been several important debates about ME/CFS in parliament more recently. Carol Monaghan, MP, and others from the All-Party Parliamentary Group on M.E. have continued to raise awareness of the issues faced by people with ME/CFS and helped generate support in 2019 for the removal of graded exercise therapy from the NICE clinical guideline.
Report to the Chief Medical Officer
The influential 2002 report to the Chief Medical Officer in England (from the CFS/ME Working Group 2002; Chapter 3) reinforced the serious and debilitating nature of ME/CFS:
“The broader impact of the disease even in its milder forms can be extensive; people who are severely affected and/or with longstanding disease are profoundly compromised, and improvement of their care is an urgent challenge.”
An important economic study in 2017 from 2020Health and the Optimum Health Clinic estimated that the annual cost to the UK economy of ME/CFS was around £3.3 billion in 2014/15:
“In our unweighted analysis, we found an average cost per person with CFS/ME of £16,966. These figures account for health care costs, the majority of disability-related welfare payments, productivity losses and unpaid informal care.”
The National Academy of Medicine
In America, a wide-ranging report from the Institute of Medicine (IOM, now the National Academy of Medicine) titled, Beyond ME/CFS: Redefining an Illness, and published in 2015, stated:
“Misconceptions or dismissive attitudes on the part of health care providers make the path to diagnosis long and frustrating for many patients. The committee stresses that health care providers should acknowledge ME/CFS as a serious illness that requires timely diagnosis and appropriate care.”
The IOM report concluded that ME/CFS is a “…serious, chronic, complex, systemic disease that can profoundly affect the lives of patients”.
However, disagreements and uncertainties remain – especially over nomenclature, definition, causation, and the most appropriate forms of management.
Although pathogenesis remains the subject of intense medical debate, a number of predisposing, precipitating and perpetuating factors are now starting to emerge.
“Therapeutic nihilism is no longer an option as there is a great deal that can be done to improve the quality of life for these patients.”Dr Charles Shepherd, ME/CFS/PVFS An Exploration of the Key Clinical Issues (2020)