News NICE 2021 Policy Positions

BMJ Rapid Response on Unpaid Carers

Doctors with M.E Director and colleagues respond regarding the ignored importance of unpaid carers

Doctors with M.E. Director, Dr. Nina Muirhead, has co-authored a BMJ Rapid Response regarding the topic of unpaid carers of people with ME. This important factor is largely ignored by the 2021 NICE ME/CFS Guidelines, the recent APPG report and the BMJ article to which they are responding.

Led by Dr. Siobhan O’Dwyer, this rapid response’s co-authors include Sarah Boothby, whose lived experience represents millions of carers of people with ME globally. Sarah’s daughter Maeve passed away needlessly, without the support and care she deserved. Her memory is a potent symbol that underlines calls for change, shining a spotlight on the large number of similar cases that should not exist.

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 –

1. National Institute of Health and Care Excellence. (2021). Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management. Available at
2. Hunter, R., Paxman, J. & James, M. (2017). Counting the Cost: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Available at…
3. The ME/CFS Priority Setting Partnership. (2022). Defining future ME/CFS research. Available at
4. All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME). (2022). Rethinking ME. Available at…
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 cross-sectional survey. BMJ Open, 12(5), e058128
16. Family Care in ME/CFS: A GW4 Research Community. Available at
17. Assessments Factsheet (Carers UK). Available at…
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…
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…
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.


  • Siobhan T. O’Dwyer Senior Lecturer in Ageing and Family Care, University of Exeter Medical School
  • 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 Health Trust; Director, Doctors With M.E.
  • Sharmila Khot, Consultant in Anaesthesia, Intensive Care and Pain Medicine, Cardiff and Vale University Health Board; Clinical Research Fellow, Cardiff University

Dr. Nina Muirhead


Dermatology Surgeon, Chair of CFS/ME Research Collaborative Medical Education Working Group, Forward ME representative, Expert Witness, UK National Institute of Health and Care Excellence.

BA(Oxon), BMBCh(Oxon), MRCS, DOHNS, MEd, PGDipDerm

Dr. Nina Muirhead is a Dermatology Surgeon at the Buckinghamshire Healthcare Trust and is a founding contributor to Doctors with M.E. Since becoming ill with M.E. in September 2016, she has done much to raise awareness of M.E., speaking and writing in various forums in the UK and abroad, including the Cambridge GP Society, the Canadian Institutes of Health Research, the Royal College of Physicians and the British Medical Journal.

Dr. Muirhead is Chair of the CFS/ME Research Collaborative (CMRC) Medical Education Working Group and a member of the Forward ME group of UK ME charities. She is also author of the ME/CFS training module on Study PRN, which carries 1 CPD credit. Dr. Muirhead is active in research and education, and supervises several medical on their projects on ME/CFS.

More NICE ME/CFS Guideline 2021 Content

Rights and Obligations in ME/CFS: Overcoming normalised disregard for standards

Doctors with M.E. proposes a simple solution to ensure success of the UK’s ME/CFS Delivery Plan. Following the then Secretary of State for Health and Social Care Sajid Javid’s announcement of a cross-nation delivery plan for ME/CFS, work has been underway at the Department of Health and Social Care to identify issues and find solutions.…

Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review

Replacing Working Group Glass Ceilings with Enforceable Minimal Standards (clickable video chapters below and on YouTube site) Further to our recent statement regarding major UK announcements, the above presentation provides the solution to concerns about new DHSC ME/CFS Delivery Planning mechanisms and final implementation. Current glass ceilings will limit success of this new process and…

Statement on UK DHSC Announcements and the APPG Rethinking ME Report

Doctors with M.E. warmly welcomes the UK Secretary of State for Health and Social Care’s recent inauguration of cross-nation delivery planning processes with his Chief Scientific Officer, Professor Lucy Chappell. Sajid Javid’s intervention on social media in the case of Maeve O’Neill was strikingly poignant, touching the hearts of many patients, carers and medics. We…

ME/CFS: What Psychiatrists need to know

and Psychology Working GroupDr Crowder BSc (hons) MB ChB FRANZCP, Associate, DwMEYochai Re’em, M.D., Associate, DwME | Website | Twitter What is ME/CFS? ME/CFS is a chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children, and all social classes. About 75% of sufferers are female. It has…

Getting compliant with NICE guideline – the patient experience requirement

Section 1.16 of the NICE ME/CFS Guideline requires that health and social care providers ensure that all staff delivering care to people with ME/CFS have an understanding of the patient experience. Doctors with M.E. asked the CFS/ME Research Collaborative Patient Advisory Group (CMRC PAG) what patients make of the new NICE guideline. They shared the…

What does good practice look like? Patients chip in

When faced with a life changing, devastating chronic illness with no cure in a young person, doctors often don’t know what to do. Doctors with M.E. has produced guidance for GPs, but what do patients want? We asked patients to share examples of when doctors got it right. It is heartening to read this collection…

Putting it into Practice: What NICE ME/CFS means for GPs

Contents Overview Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children and all social classes. About 75% of sufferers are female. It has a worse quality of life score than many other serious illnesses including cancer,…

NICE 2021: A Triumph of Science over Discrimination

Doctors with M.E. stands ready to work with partners and organisations to bring medical education up-to-date and assist in developing the right services for ME/CFS patients. “The new guideline represents a positive and total paradigm change, uniting around the science, official disease classification and medico-legal implications.” “This translation of scientific knowledge into clinical practice…

DwME recognises research scientist Caroline Kingdon with post-viral clinical expert Dr. William Weir

Doctors with M.E. recognise the contributions to clinical practice, research literature and scientific innovation of our latest Honorary Fellows, Caroline Kingdon and Dr. William Weir. Their contributions have accelerated the quality of empirical work and grounded the literature in frontline clinical relevance. This experience has most recently culminated in their roles as full Committee Members…

girl leaning her head on her hand while closing her eyes

Public Letter to RCPCH: DwME Associate and Neurodisability Paediatrician Dr. Ben Marsh calls for explanation

A call for the Royal College of Paediatrics and Child Health to explain undermining of scientific review Doctors with M.E. Associate, Neurodisability Paediatrician and representative on the JLA Priority Setting Partnership Steering Group, Dr. Ben Marsh, has publicly written to the President of The Royal College of Paediatrics and Child Health (RCPCH). He requested an explanation for the College’s…

The NICE debacle – will NICE survive?

The current NICE debacle and extraordinary deviation from normal procedure and published protocol is further evidence of institutionalised discrimination by large sections of the UK medical establishment.  That one professional and patient group should be treated in a manner at odds with clear and growing scientific knowledge would be unacceptable in any other disease.  Yet…

Doctors with M.E. Honorary Fellow and founding father of the Human Genome Project comments on the NICE pause – “it is time for the UK to join the rest of the scientific community”

Doctors with M.E. Honorary Fellow Professor Ron Davis has issued a powerful statement condemning the failure of the UK National Institute of Clinical and Care Excellence to maintain its independence. He describes how it has instead accommodated vested interests, which perpetuate low standards and contra-scientific medical belief systems. “It is a travesty that NICE is…

Global scientific communities and clinicians urge NICE to publish ME/CFS guideline now

Doctors with M.E. Board, Fellows & Associates are co-signatories to a public letter written by Dr. of the Center of Global Public Health at the University of California, Berkeley. The letter writes to urge NICE to publish the new ME/CFS guideline. It is signed by scientists, clinicians, academics and other experts from the…

BBC Radio 4: Doctors with M.E. feature on flagship Woman’s Hour

ME, Long Covid and the NICE Guideline 2021 Delay Doctors with M.E. Director, Dr. Nina Muirhead, and Doctors with M.E Honorary Fellow and Action for ME Medical Advisor, Dr. David Strain, discuss ME/CFS, Long Covid, the NICE guideline delay and the need for more education and resources in an interview on BBC Radio 4 Woman’s…

bridge over river in city

Public Letter to DHSC, MHRA, HoC, NICE: Call for a ‘Medical Regulatory Agency’

A call for change in the face of long-standing regulatory failure The following public communication from our Governance Board regards the opportunity for a new “Medical Regulatory Agency”, ready for the post-brexit and the machine learning digital eras.  The letter also contains background pertaining to long-standing regulatory failure, unlawful medical norms, contra-scientific medical belief systems and…

Rapid Response and Expert Comment: NICE Guideline Delay and Accommodation of Unlawfulness

We are very disappointed to hear of the ‘pause’ in publication of the NICE ME/CFS Guideline, already delayed in April. Following the hard work of the Guideline Development Group, we received news of the further delay of guideline publication with both dismay and profound concern for practitioners, their organisations and patients. Continued delay or deviation…


Revisiting NICE Expert Testimony on trials in ME/CFS: Professor Jonathan Edwards

The following expert testimony was provided to the NICE ME/CFS Guidelines Committee by Professor Jonathan Edwards. It regards the difficulties of conducting trials in ME/CFS and the implications of not accounting for these. The difficulties of conducting intervention trials for the treatment of myalgic encephalomyelitis / chronic fatigue syndrome Summary testimony Therapeutic trials for ME/CFS…

library high angle photro

Revisiting NICE Expert Testimony on ME/CFS education and training: Dr. Nina Muirhead

The following expert testimony was provided to the NICE ME/CFS Guidelines Committee by Doctors with M.E. Director, Dr. Nina Muirhead. It regards the problematic context of lacking information, education and support for health and social care professionals. Information, education and support for health and social care professionals providing care for people with ME/CFS. Summary testimony…

Honorary Fellow comments on the BMJ and NICE Guideline Committee Resignations

Is it just me, or is the BMJ’s take on those NICE guideline committee resignations maybe a little biased? The BMJ are reporting that four members of NICE’s guideline committee on ME/CFS have stood down. One is the medical advisor of the ME Association, who stated yesterday that he found it too difficult to combine…

DwME joins call for NICE to maintain scientific process

Further to our position statement on the 2021 NICE guideline update, Doctors with M.E. has joined the call for NICE to ensure that unconsulted changes are not injected, as these would avoid scrutiny by the scientific community. DwME considers the 2021 NICE guideline to be a watershed moment in the history of ME/CFS medical care…

Position Statement: 2021 NICE Guideline Update

On the 10th of November 2020, the National Institute for Health and Care Excellence (NICE) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). NICE has updated its 2007 recommendations on the use of psycho-behavioural treatments for ME/CFS, concluding that Graded Exercise Therapy (GET) should no…