Hidden from Sight: Why the complexity of ME/CFS needs to be recognised by policy makers, by Tomruk Ustunkaya and Richard Machin, by People, Place and Policy Vol 15, #2, pp. 91-99, November 2021

Background:

An estimated 260,000 people in the UK are living with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS); this neurological condition has been described as

‘a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients’ (Institute of Medicine, 2015).

Despite this, there remains a lack of clarity about the diagnosis and treatment of ME/CFS. The authors of this paper refer to ME/CFS but recognise that other terms (for example systemic exertion intolerance disease, chronic fatigue immunity deficiency syndrome, and post-viral fatigue syndrome) are used to describe this neurological condition, and for some people these are preferred names. This paper adopts the definition of ME/CFS as a neurological condition of unknown origin as defined by the World Health Organisation and accepted by the UK Department of Health (WHO, n.d.).

The House of Commons debate which took place on 21 June 2018 will be taken as a significant starting point for the discussion on ME treatment and research; this is regarded as a key moment in the public debate and recognition of the condition stating that ME is ‘a hidden illness’ (Hansard HC Deb., 21 June 2018d).

Historically, there has been an emphasis on ME/CFS as being psychological in nature and this continues to exert a damaging influence on key areas of public policy. This paper considers the hidden nature of ME/CFS in relation to two particular issues: funding for research and social security policy.

1. It is argued that medical research into the condition is impeded by a lack of adequate government funding. This is identified as critical in achieving a comprehensive health regime for sufferers.
2. Social security is an important area of concern for ME/CFS suffers and a key policy area; correct entitlement to social security benefits is crucial for people with disabilities but appropriate access to welfare benefits is often obstructed by misunderstanding of the condition.

It is argued that in both of these areas, a greater understanding of the impact of ME/CFS is required to allow policy makers and practitioners to more appropriately meet the needs of people living with the condition.

Conclusion

Clarity is paramount to bring ME/CFS out from the ‘invisible’ sphere in terms of both the treatment and definitions of the illness, and the ways in which the condition is
understood by government departments, institutions, and society. This clarity will be
difficult to attain without adequate funding for research into the illness and may explain the ongoing preference for psychological treatments.

The emergence of post-COVID syndrome (long-COVID) has emphasised how important it is to appropriately fund research into long-term and debilitating conditions. Interestingly, the Department for Work and Pensions have issued new guidance stating that children suffering with post-COVID syndrome can be awarded disability benefit for a period of 12 months (DWP, 2021); this has provided the type of clarity that is lacking for ME/CFS patients. The authors of this paper recognise the challenges that a lack of funding presents for the treatment of the condition and are supportive of the medical profession and the on-going medical support provided to ME/CFS patients.

For those members of society with greatly reduced quality of lives due to the
challenges presented by ME/CFS, it is clear that public policy and bureaucratic decision-making processes must respond more appropriately to their needs. Positive government intervention is necessary to end the uncertainty for ME/CFS patients. The human cost of policy failure for people with ME/CFS is paramount; however, the financial costs are also significant. A study estimated that the total cost of ME/CFS to the UK economy is £3.3 billion per year, or only £16,966 per person living with the condition (Hunter et al., 2017).

These figures underscore the importance of providing adequate funding for treatment
and a functioning social security safety net. Until the WHO classification of ME/CFS as a neurological condition is fully recognised by policy makers, we will continue to see challenges for patients, not only in terms of funding for treatment and social security which have been examined in this paper, but across the full spectrum of public policy. ME/CFS patients experience ‘multiple pathophysiological changes that affect multiple systems’ (Centers for Disease Control, 2018). Policy makers must recognise the severity of the condition to make appropriate responses to it.

The hidden nature of this condition can be linked to an absence of a biomarker and
because uncertainty surrounds it medically and in society. However, this should not
mean that the needs of ME/CFS patients are overlooked or marginalised; the challenges presented by the condition are a reality for patients and their families. Patients are entitled to expect appropriate support from the Department of Health, Department for Work and Pensions, employers, and educational establishments.

The words of Alex Chalk, MP, (Hansard HC Deb., 21 June 2018c) offer hope for a future characterised by a determined, active effort to help

“I conclude by paying tribute to the silent sufferers of this cruel disease in our country. Let the word go out from the House of Commons: they shall be silent no longer”.

Read the full paper