Despite M.E.’s severe and widespread impact, young people and adults – and the doctors supporting them – struggle to access and / or refer to appropriate services and support. UK charity, Action for M.E., shares key findings from its Big Survey of 4,000 people with M.E. on symptom management and specialist services.
Myalgic Encephalomyelitis (M.E.) affects an estimated 250,000 children, young people and adults in the UK, including an estimated 12,000 people in Wales. Within the NHS, a diagnosis of chronic fatigue syndrome (C.F.S.), C.F.S. / M.E., or M.E. / C.F.S. is often given.
Experiences of this chronic, fluctuating, neurological condition differ from individual-to-individual, and symptoms and severity can fluctuate and change over time. People with M.E. experience debilitating pain, fatigue and a range of other symptoms linked to post-exertional malaise.
Post-exertional malaise describes an increase in symptoms after using even small amounts of physical, cognitive or emotional energy; this may be delayed by hours or even days.
People with M.E. are ‘measurably more disabled’ than those with multiple sclerosis, work fewer hours, and have lower income.
At least one-in-four people are so severely ill they are housebound, and often bedbound.
There has been much scientific debate about the safety and efficacy of the symptom management approaches recommended by the National Institute for Health and Care Excellence (NICE) guideline for England and Wales, namely Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET).
These treatments are based on the theory that the debility of the disease is the result of deconditioning which is the result of a fear of activity, symptom focusing, and unhelpful cognitions.
In light of this, NICE is in the process of updating Guideline CG53 for M.E., with publication expected in December 2020.
According to the current guideline, GET aims to ‘improve the person’s C.F.S. / M.E. symptoms and functioning, aiming towards recovery,’ while CBT aims to ‘reduce the levels of symptoms, disability and distress associated with the condition.’
However, re-analyses of GET research has found insufficient evidence of effectiveness, noting that studies using definitions requiring hallmark criteria, such as post-exertional malaise, were ‘blatantly missing’.
In the case of the largest study, the 2011 PACE trial found that the original study did not consistently follow protocol procedures, that rates of recovery were consistently low and not significantly different across treatment groups, and that ‘the modest treatment effects obtained on self-report measures in the PACE trial do not exceed what could be reasonably accounted for by participant reporting biases.’
Action for M.E.’s 2019 Big Survey of more than 4,000 people with M.E. (www.actionforme.org.uk/big-survey) found that more than a third (38 per cent) said that GET worsened symptoms, and less than one-in-10 (six per cent) said that it helps / has helped manage symptoms. The management approach that most people with M.E. find helpful is pacing, with 88 per cent of survey respondents saying they have tried it.
Pacing as self-management is focused on a person learning to listen to their body. It should not be seen as a treatment, but more as a way of coping with the impact of M.E. Taking a balanced, steady approach to activity counteracts any tendency to overdo things. Keeping their activity levels within sensible limits avoids overly aggravating their symptoms and prolonging the recovery phase after the increased activity.
For some, activity may be very minimal (especially for those who are severely affected) yet still cause considerable impact on energy and symptoms.
We know that some clinicians consider pacing to be about carefully managing activity and other stressors to avoid post-exertional malaise. Others would consider it a way to first stabilise then gradually build up increases in activity, sometimes called pacing up.
For example, a 2019 survey of more than 90 NHS professionals working in pain and / or fatigue management (not necessarily specialist M.E. services) found that 87 per cent considered ‘gradually increasing activities’ to be part of pacing. This range of views reiterates the importance of the collaborative relationship between the patient and professional, as set out in NICE’s general principles of care in its M.E. / C.F.S guideline.
It may also be possible to prescribe medication for individual symptoms, including sleep disturbance, pain, nausea and orthostatic intolerance. People with M.E. often have a limited tolerance to drugs, so starting lower doses than usual may be needed.
A number of specialist M.E. clinics exist across the UK with multidisciplinary teams, usually offering diagnostic services and specialist symptom management programmes. However, in Wales there is no dedicated service. Some people get referred out of area to centres in England and can receive targeted support to help them manage their symptoms. Others receive more generalised support from a pain or fatigue service which is designed around the needs of other conditions.
Our Big Survey data shows that, compared with patients in England, people with M.E. / C.F.S. in Wales wait longer for a diagnosis, more than a quarter wait more than six years, feel more isolated, are more likely to stop or reduce paid work, and are more likely to not see any NHS health professional about M.E.
In 2009 an M.E.-C.F.S. Task and Finish Group was established to put forward recommendations on improving NHS Wales services for people with M.E. / C.F.S.; overall progress has been slow. They are now working with similar groups for conditions, such as arthritis and pain, to consider more general improvements to improve outcomes for each group.
Signposting Your Patients
A number of local and regional support groups across Wales also offer invaluable practical and emotional support to people with M.E.:
• The Welsh Association of M.E./CFS (Tel: 02920 515061. Web: www.wames.org.uk)
• M.E. Support in Glamorgan (Tel: 02920 842499. Web: www.mesupportinglamorgan.co.uk)
As the only UK charity supporting both children and adults with M.E., Action for M.E.’s Information and Support Service (Tel: 0117 927 9551. Web: www.actionforme.org.uk) offers one-to-one support by phone and email on all aspects of living with M.E., and can refer families to its expert children and young people’s service in complex cases.
Health, education and social care professionals can find evidence-based information, signposting and resources at www.actionforme.org.uk/medical.
Hopes for Future Research
A historic lack of investment in biomedical research means that the cause or causes of M.E. remain unknown. Nevertheless, a US National Academy of Medicine report (2015) showed substantial evidence of physical abnormalities in the microbiome and cardiovascular, autonomic nervous, neuroendocrine, metabolic and immune systems. Much of this has come from small pilot studies, and there is an urgent need to invest resources to accelerate biomedical M.E. research.
A new alliance of people with M.E., researchers, and charity advocates, the M.E. / C.F.S. Biomedical Partnership, is planning a genome-wide association study (GWAS) for M.E. Led by Professor Chris Ponting, University of Edinburgh, and making a funding application in early 2020, this aims to identify new avenues for further research.
For more information, visit www.mebiomed.org.uk.
The GWAS was catalysed by the UK C.F.S. / M.E. Research Collaborative (CMRC) which, since its inception in 2013, has successfully brought together significant numbers of researchers, clinicians, patients, charities, and mainstream funders. Its sixth annual conference, open to clinicians, researchers and people with M.E., takes place in Bristol, on Tuesday 10th and Wednesday 11th March 2020.
For more information, visit www.actionforme.org.uk/CMRC.
1. Kingdon C et al. 2018. Functional Status and well-being in people with M.E./CFS compared with people with multiple sclerosis and healthy controls, PharmacoEconomics Open
2. Smith M et al. 2016. Diagnosis and treatment of M.E./CFS: July 2016 addendum, Agency for Healthcare Research and Quality, Evidence Reports/Technology Assessments, 219
3. Wilshire et al (2018. Rethinking the treatment of CFS—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT, BMC Psychology)
4. Antcliff, D et al. 2019. Survey of activity pacing across healthcare professionals informs a new activity pacing framework for chronic pain/fatigue. Musculoskeletal Car
Case Study: Cardiff-Based Surgeon, Dr Nina Muirhead
‘I became ill with M.E. / C.F.S. in 2016. I was severely affected for much of 2017 and am now moderately affected. My understanding and belief in the illness has completely changed since becoming ill. I have first-hand experience of the negative impact of ignorance of the illness among health and social care professionals and the harm it can cause. I have also taken the time to research undergraduate and postgraduate education and resources. This includes forging links and connecting with individuals in healthcare education roles in the UK, Scotland, Ireland and Wales, as well as meeting with international colleagues involved with M.E. / C.F.S. research and education.
‘As a doctor, I did not recognise the illness myself. Current information convinced me I did not have M.E. / C.F.S. I saw 13 different doctors before I was diagnosed. The information, education and support provided by the NHS, Healthcare Education England, universities and Royal College of General Practitioners is in this case outdated and does not always fit with the patient experience.
‘UK M.E. / C.F.S. education and training is not mandatory; often it becomes merged with other medically-unexplained symptoms. Approximately one-third of medical schools teach M.E. / C.F.S. but the majority spend two hours or less on the topic.
‘There is a huge paradigm shift in understanding of this illness which will continue to evolve with up-to-date international biomedical research. Education on M.E. / C.F.S. must be updated and reflect the experience of patients whose lives are completely changed by this devastating illness.’
Dr Muirhead leads a Medical Education Group as part of the CMRC, which aims to enhance understanding of M.E. within the health profession and educate healthcare practitioners and trainees. The group meet remotely every quarter and contains a mix of doctors, physiotherapists, patients, professionals and charity representatives from Wales, Scotland, Northern Ireland and England.
For more information, or if you would like to express interest in attending a teaching event, email firstname.lastname@example.org.