An estimated 7,000 people in Northern Ireland live with myalgic encephalomyelitis, a neurological condition at least as disabling as cancer or multiple sclerosis. Despite this, there are no specialist services, and no guideline other than that produced by the National Institute for Health and Care Excellence in England and Wales – which is undergoing essential review. Hope 4 M.E. and Fibro Northern Ireland and Action for M.E. share key information about the condition, and how you can support your patients to manage their symptoms.

Myalgic encephalomyelitis (M.E.) affects an estimated 250,000 people in the UK, including an estimated 7,000 people in Northern Ireland. 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 the increase in symptoms after using even small amounts of physical, cognitive or emotional energy; this may be delayed by hours or even days.

Volunteer-led charity, Hope 4 M.E. and Fibro Northern Ireland (NI), has more than 1,500 online members and those who are able to do so meet monthly for peer support; new members are always welcome. Monthly meetings are livestreamed to members too ill to attend in person.

The charity hosts conferences for patients and professionals, bringing top doctors and researchers to Northern Ireland, as well as raising funds for important biomedical research.

For more information, visit www.hope4mefibro.org.

Action for M.E. is the only UK charity that supports both children and adults with M.E. Its information and support service 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.

Symptom Management

There has been much debate and discussion about the main symptom management approaches recommended by the National Institute for Health and Care Excellence (NICE) guideline, namely Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), and the published evidence for them, as to whether or not they are effective, and whether they may cause harm. In light of this, NICE is in the process of updating Guideline CG53 for M.E., expected to be completed in October 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.’

Yet there is no high-quality, peer-reviewed published evidence to support either the efficacy or the safety of GET, whoever provides it, while patient surveys consistently find that GET makes symptoms worse, or makes no difference.

Action for M.E.’s 2019 Big Survey of more than 4,000 people with M.E. 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.

Within published, peer-reviewed research, there is also considerable debate about the effectiveness and safety of CBT. Some people with M.E. tell us that they find CBT useful; while a significant number say that it makes no difference and even report an increase in symptoms following CBT. It is frequently unclear whether this is specialist CBT for M.E. or a more general approach.

The management approach that most people with M.E. find helpful is pacing, with 88 per cent of Action for M.E.’s Big Survey respondents saying that 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.

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.

Evidence-Based Information

In Northern Ireland, Hope 4 M.E. and Fibro NI has been working to support GPs and health professionals to have improved access to evidence-based information about diagnosis, treatment and management of M.E.

After more than a decade of campaigning by patients and advocates for M.E. specialist services, interviews took place in September 2018 for a new clinical lead for Northern Ireland. Unfortunately, this new service is not yet operational, despite a suitable candidate being appointed. Further meetings, facilitated by the Patient and Client Council Northern Ireland, with patient advocates and Health & Social Care Boards are planned for 2020.

An area of concern which the charity has identified is that the specialist knowledge and understanding of the condition is not shared across the healthcare sector, with many patients experiencing differing standards of care.

Hope 4 M.E. and Fibro NI is working to address this, offering short slide presentations and information packs to GP surgeries’ multidisciplinary teams. It has also been hosting screenings of award-winning M.E. documentary, Unrest, for second-year medical students at Queen’s University Belfast during development weeks since 2018. The results of students surveyed at screenings are clear evidence of the need for effective training about M.E. for medical students

Hopes for Future Research

Dr David Systrom, a Respiratory and Intensive Care Doctor working at Brigham and Women’s Hospital in Boston, spoke at Hope 4 M.E. and Fibro NI’s New Frontiers in M.E. conference in September 2019. He runs a research clinic for patients with exercise intolerance and through that has become involved in researching and treating M.E. DVD or USB recordings are available to order by contacting Hope 4 M.E. and Fibro NI.

Dr Systrom’s team have used invasive cardiopulmonary exercise testing, measuring heart pressures, respiration, heart rate and blood markers in arterial and venous blood samples during a six-minute exercise protocol. Their results demonstrated that all M.E. patients had low right atrial pressures, the opposite of what would be found in deconditioning.

But the management models of GET and CBT recommended by the NICE guideline are based on an antiquated theory that M.E. is perpetuated by deconditioning. This research adds to a significant body of evidence showing that deconditioning is NOT the cause of M.E. and / or C.F.S., and is in fact a consequence of the condition.

Physical abnormalities have in fact been found in the metabolic systems, the microbiome, cardiovascular system, autonomic nervous system, neuroendocrine system and the immune system. However, most studies have been small pilot studies, and there is an urgent need to invest resources into biomedical M.E. research, to reduce the research deficit.

A genome-wide association study (GWAS) for M.E. led by Professor Chris Ponting and Dr Luis Nacul is in its final planning stages, subject to funding, with the aim of identifying new avenues for further research. Patients have been fully involved from the planning stages and will be signed up for future research. The GWAS was catalysed by the UK C.F.S. / M.E. Research Collaborative (CMRC), established in 2013.

The CMRC runs annual conferences, which clinicians and researchers are welcome to attend, and its sixth conference takes place in Bristol, 10th and 11th March.

For more information, visit www.actionforme.org.uk/CMRC.

Case study: Karen

One-in-four people with M.E. are severely affected, like Karen. We wanted to share her story here to highlight the impact of severe M.E., as this vulnerable group are so often unseen and unheard.

Karen trained to be a doctor, graduating from her medical degree in 1986 with First-Class Honours. She loved outdoor activities, such as hill-walking, travelling, and was an inquisitive, fun-loving, adventurous person. In 1990, she became ill with a virus and had to take months off work. She returned to work part-time but had a severe relapse in 1993.

Over the past 25 years, Karen has been predominantly bed-bound and house-bound. On rare occasions she has been able to go outdoors (sitting or in a wheelchair) for up to one hour. Any longer and the physical repercussions are horrendous.

In 2017, Karen became unwell and had to attend the A&E for emergency assessment. Given that she rarely leaves the house, this was a huge upheaval and has had a catastrophic impact on her physically. Following attendance at the hospital, Karen experienced a serious decline in all the major M.E. symptoms. She now needs an electric wheelchair upstairs and downstairs to get to the bathroom, and a stair-lift as she is no longer able to manage stairs.

Over the past 25 years Karen has missed out on millions of everyday events. She has been unable to meet a partner or have children. She was too ill to attend both her sisters’ weddings, her parents’ 80th birthday celebrations, or Christmas dinners. She does not go walking, or have holidays or hobbies. She can’t watch TV at all. Listening to the radio or reading is limited to 15 minutes on a good day, and not at all on a bad day. She lives with and is dependent upon support from her elderly parents with laundry, cooking, cleaning, and hair washing / drying. Self-care is limited to a shower when she has enough energy, and Karen has sensitivity to light and noise: even conversation must be limited. She is no longer able to have friends to visit or chat on the phone, and all activities must be limited to 15 minutes, with hours of recovery time.

Despite all she has faced, Karen volunteers for minutes at a time from bed as Educational Officer for Hope 4 M.E. and Fibro NI. She says this gives her purpose and a sense of something good coming from her illness. She has set up a bursary for healthcare professionals and students to attend M.E. research conferences in the UK.

Potential applicants can contact hope4mefibro@outlook.com for further information.