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Health secretary pledges more ME/CFS research as he reveals that relative has condition

BMJ 2022; 377 doi: https://doi.org/10.1136/bmj.o1341 (Published 27 May 2022) Cite this as: BMJ 2022;377:o1341

Rapid Response:

The missing piece in new treatment guidelines and research priorities for ME/CFS

In the UK, more than 250,000 people have Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) [1], a devastating illness that is estimated to cost the British economy £3.3 billion per year [2]. Although ME/CFS has long been maligned, three recent publications herald a dramatic change in the way it will be understood and treated in the UK.

As Ingrid Torjesen explains in her article 'Health secretary pledges more ME/CFS research as he reveals that relative has condition', the new NICE Guideline for ME/CFS [1] encourages a shift away from psychological and behavioural treatments. Consistent with this, research priorities published last month [3] call for a focus on biological mechanisms, diagnostic tests, and the development of medical treatments. Finally, the recent All-Party Parliamentary Group (APPG) report [4] outlines clear expectations of, and support for, a transformation in the way ME/CFS is addressed in research, clinical practice, and social care.

Largely ignored in all three documents, however, are unpaid carers (known outside the UK as family carers or family caregivers). The vast majority of people with ME/CFS rely on their families for care and many of those families have been the driving force behind the changes to research and treatment that are now unfolding.

Unpaid caring is known to cause physical and mental illness (including high rates of suicidal ideation [5]), financial distress, and social isolation [6-8]. There has been limited research on unpaid care in the specific context of ME/CFS, but the few existing studies clearly show that the usual toll of caring for a sick or disabled family member is compounded by the historic prejudice surrounding ME/CFS and the absence of evidence-based treatments [e.g.9-15].

The new NICE Guideline suggests that unpaid carers should be involved in care planning for people with ME/CFS. We welcome this recommendation because, by necessity, carers have become experts on the management of ME/CFS. In recent consultations [16], however, people caring for family members with ME/CFS told us that relationships with health professionals are fraught. At best carers have been ignored. At worst they have been accused of fabricating or inducing illness and threatened with child protection proceedings. These difficult relationships are a serious impediment to the meaningful involvement of unpaid carers in clinical decision-making, and the NICE Guideline offers no advice on how best to forge positive, constructive relationships between clinicians and carers.

The Guideline also recommends that carers be encouraged to seek a Carer’s Assessment [17] and be given information on support groups and financial aid. But these are generic recommendations that do little to address the unique needs of ME/CFS carers and, in an under-resourced system, have been of limited benefit to carers more generally [18-21].

While we applaud the new research priorities, it may be decades before biomedical breakthroughs are made or translated into effective, widely available treatments for ME/CFS [22]. Similarly, while the APPG report sets a clear expectation for improved health and social care provision for people with ME/CFS, that change is likely to be slow. In the meantime, families will continue to provide the majority of care for people with ME/CFS and bear the physical, psychological, and economic scars of doing so.

A change in the UK’s approach to ME/CFS is long overdue, but without a focus on unpaid carers the puzzle will always be missing a piece. The wellbeing of carers must also be a priority in ME/CFS research and effective strategies must be developed to address their needs, and recognise and respect their expertise, in clinical practice and social care.

-In loving memory of Maeve Boothby O’Neill, 27, for whom change came too late-

References
1. National Institute of Health and Care Excellence. (2021). Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management. Available at https://www.nice.org.uk/guidance/ng206
2. Hunter, R., Paxman, J. & James, M. (2017). Counting the Cost: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Available at https://www.theoptimumhealthclinic.com/wp-content/uploads/2017/09/Counti...
3. The ME/CFS Priority Setting Partnership. (2022). Defining future ME/CFS research. Available at https://psp-me.co.uk/explore-the-top-10/
4. All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME). (2022). Rethinking ME. Available at https://appgme.co.uk/wp-content/uploads/2022/05/Rethinking-ME-a-report-b...
5. O’Dwyer, S.T., Janssens, A., Sansom, A., Biddle, L., Mars, B., Slater, T., Moran, P., Stallard, P., Melluish, J., Reakes, L., Walker, A., Andrewartha, C. & Hastings, R.P. (2021). Suicidality in family caregivers of people with long-term illnesses and disabilities: A scoping review. Comprehensive Psychiatry, 110, 152261.
6. Pinquart, M. & Sorensen, S. (2003). Differences between caregivers and non-caregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18(2), 250-267.
7. Lee, M.H., Park, C., Matthews, A.K. & Hsieh, K, (2017). Differences in physical health and health behaviors between family caregivers of children with and without disabilities. Disability and Health Journal, 10(4), 565-570.
8. Adelman, R.D., Tmanova, L.L., Delgado, D., Dion, S. & Lachs, M.S. (2014). Caregiver burden: A clinical review. JAMA, 311(10), 1052-1060.
9. Asubel, B. (2020). What ME/CFS caregivers want you to know. Work, 66, 361-364.
10. Brittain, E., Muirhead, N., Finlay, A.Y. & Vyas, J. (2021). Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS): Major impact on lives of both patients and family members. Medicina, 57, 43.
11. Catchpole, S. & Garip, G. (2021). Acceptance and identity change: An interpretative phenomenological analysis of carers’ experiences in myalgic encephalopathy / chronic fatigue syndrome. Journal of Health Psychology, 26(5), 672-287.
12. Harris, K., Band, R.J., Cooper, H., Macintyre, V.G., Mejia, A. & Wearden, A.J. (2016). Distress in significant others of patients with chronic fatigue syndrome: A systematic review of the literature. British Journal of Health Psychology, 21, 881-893.
13. Milhelicova, M., Siegel, Z., Evans, M., Brown, A. & Jason, L. (2016). Caring for people with severe myalgic encephalomyelitis: An interpretative phenomenological analysis of parents’ experiences. Journal of Health Psychology, 21(12), 2824-2837.
14. Missen, A., Hollingworth, W., Eaton, N. & Crawley, E. (2011). The financial and psychological impacts on mothers of children with chronic fatigue syndrome (CFS/ME). Child: Care, Health and Development, 38 (4), 505-512.
15. Vyas, J., Muirhead, N., Singh, R., Ephgrave, R. & Finlay, A.Y. (2022). Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey. BMJ Open, 12(5), e058128
16. Family Care in ME/CFS: A GW4 Research Community. Available at https://gw4.ac.uk/family-care-in-me-cfs/
17. Assessments Factsheet (Carers UK). Available at https://www.carersuk.org/images/Factsheets/2022-23_factsheets/Assessment...
18. Marczak, J., Fernandez, J-L., Manthorpe, J., Brimblecombe, N., Moriarty, J., Knapp, M. & Snell, T. (2021). How have the Care Act 2014 ambitions to support carers translated into local practice? Findings from a process evaluation study of local stakeholders’ perceptions of Care Act implementation. Health and Social Care in the Community. DOI: 10.1111/hsc.13599
19. Carers Trust. (2016). Care Act for carers, one year on: Lessons learned, Next steps. Available at https://carers.org/downloads/resources-pdfs/care-act/care-act-for-carers...
20. Calvo-Perxas, L., Vilalta-Franch, J., Litwin, H., Turro-Garriga, O., Mira, P. & Garre-Olmo, J. (2018). What seems to matter in public policy and the health of informal caregivers? A cross-sectional study in 12 European countries. PLoS One, e0194232.
21. Carers UK. (2021). State of Caring 2021: A snapshot of unpaid care in the UK. Available at https://www.carersuk.org/images/Research/CUK_State_of_Caring_2021_report...
22. Morris, Z.S., Wooding, S. & Grant, J. (2011). The answer is 17 years, what is the question: Understanding time lags in translational research. Journal of the Royal Society of Medicine, 103(12), 510-520.

Competing interests: No competing interests

08 June 2022
Siobhan T. O'Dwyer
Senior Lecturer in Ageing and Family Care
Sarah Boothby [Former Carer]; Georgia Smith [Research Fellow, University of Exeter Medical School]; Lucy Biddle [Senior Lecturer, Bristol Medical School]; Nina Muirhead [Dermatology Surgeon, Buckinghamshire NHS Health Trust; Director, Doctors With ME]; Sharmila Khot [Consultant in Anaesthesia, Intensive Care and Pain Medicine, Cardiff and Vale University Health Board; Clinical Research Fellow, Cardiff University]
University of Exeter Medical School
University of Exeter Medical School