Guest post written by Dr Nina Muirhead BA(oxon) BMBCh(oxon) MRCS DOHNS MEd PGDipDerm. Dr Muirhead is also associated with or alumni of: Oxford University, Open University, Cardiff University, Buckinghamshire Healthcare NHS Trust, the Royal College of Surgeons and the Royal College of Physicians.
There are an estimated 250,000 people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the UK, and of the 1.5 million long COVID sufferers, an estimated 380,000 are reporting similar symptoms to ME/CFS that are hugely affecting their ability to work and activities of daily living. It affects both adults and children of all ethnicities.
The cost of ME/CFS and long COVID to the taxpayer is billions. The cost to the patient and their relatives is the major impact on quality of life. The loss to society of productive people in the prime of their lives is heart-breaking. The cost to the NHS of healthcare professionals not being able to recognise and diagnose ME/CFS is a cost that can be immediately addressed by improving knowledge.
Many patients encounter disbelief among medical professionals, mis-diagnosis, long delays in diagnosis or undergo many referrals and investigations before finally being diagnosed with ME/CFS.
ME/CFS is a disease that should be easy to recognise and diagnose after 3 months of four key symptoms, as outlined by NICE guidelines:
- Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest
- Post-exertional malaise (PEM)
- Unrefreshing sleep or sleep disturbance
- Cognitive difficulties or ‘brain fog’
ME/CFS is neither a diagnosis of exclusion nor an exclusive diagnosis. Take a good history, make a diagnosis, manage patients’ symptoms and offer support. Keep looking for other treatable pathology.
Who Should Learn About ME/CFS?
Every healthcare practitioner should be aware of ME/CFS and how to diagnose it. It affects multiple body systems and patients present in a variety of ways. Learning to recognise and suspect or diagnose this disease early can enable patients to get early support and appropriate advice to rest and pace.
Other associated symptoms outlined by NICE guidance include:
- Orthostatic intolerance, autonomic dysfunction, dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position
- Temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold
- Neuromuscular symptoms, including twitching and myoclonic jerks
- Flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches
- Intolerance to alcohol, or to certain foods and chemicals
- Heightened sensory sensitivities, including to light, sound, touch, taste and smell
- Pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.
What Can I Do to Help People with ME/CFS?
You can learn more about the updated management guidelines as outlined by NICE in 2021, which are captured in Learna | StudyPRN’s free ME/CFS CPD learning resource.
Learna provides up-to-date learning resources and question banks that help with exam preparation and improve confidence and clinical practice, with ME/CFS being a topic covered in the MRCGP Applied Knowledge Test (AKT).
More needs to be done to understand the underlying pathophysiology of ME/CFS and to find reliable biomarkers and disease modifying treatments. The online learning module, delivered by Learna | StudyPRN, touches on supportive medication and potential future pharmacological treatments and new research evidence emerging linking shared pathophysiology of at least a subset of patients with long COVID as overlapping with ME/CFS.
NICE advise we provide care for people with ME/CFS using a coordinated multidisciplinary approach. Based on the person's needs, include access to health and social care professionals with expertise in the following as a minimum, with additional expertise depending on symptoms:
- Medical assessment and diagnosis
- Developing personalised care and support plans
- Self-management strategies, including energy management
- Symptom management, including prescribing and medicines management
- Managing flare-ups and relapses
- Activities of daily living, including dental health
- Psychological, emotional and social wellbeing, including family and sexual relationships
- Diet and nutrition
- Mobility, avoiding falls and problems from loss of dexterity, including access to aids and rehabilitation services
- Social care and support
- Support to engage in work, education, social activities and hobbies.
Insights for Better Awareness of ME/CFS
As awareness of ME/CFS grows, it is crucial to shed light on the key issues and challenges faced by those affected, as well as the need for ongoing research and support. The essential discussion points surrounding ME/CFS aims to foster better understanding, reduce stigma, and improve the lives of patients and their families.
Raising awareness and reducing stigma
It is essential to raise awareness of ME/CFS to help the public and healthcare professionals understand the complexities of the condition. Reducing stigma around ME/CFS can lead to better support for those affected and encourage more funding for research. Public campaigns, educational resources, and sharing personal stories can contribute to increased understanding and empathy.
The need for more research
ME/CFS remains a poorly understood condition with no known cause or cure. Increased research is necessary to develop better diagnostic tools, identify effective treatments, and ultimately find a cure. Research can also provide valuable insights into the underlying mechanisms of the condition, improving the lives of those affected.
The role of healthcare providers
Accurate diagnosis and management of ME/CFS can be challenging due to the complex nature of the illness. Healthcare providers must be knowledgeable about the condition and stay informed about the latest research to provide appropriate care for their patients. Improving the education of healthcare professionals can lead to better patient outcomes and reduced suffering.
Personal experiences of living with ME/CFS
Sharing personal stories of living with ME/CFS can help raise awareness about the condition and provide support for those affected. Everyone's experience with the illness may differ, but common themes include coping strategies, the impact on relationships and work, and the challenges of managing daily life.
Navigating the healthcare system
Individuals with ME/CFS may find it difficult to navigate the healthcare system due to a lack of understanding or recognition of the condition by some healthcare professionals. Finding knowledgeable practitioners to help manage the illness can be challenging, and patients may need to advocate for themselves to receive appropriate care.
Alternative and complementary therapies
Some individuals with ME/CFS find relief from symptoms by exploring alternative and complementary therapies, such as acupuncture, massage, and nutritional supplements. While these approaches may not work for everyone, they can provide additional options for symptom management and improved quality of life.
The debate around "Chronic Fatigue Syndrome"
The term "Chronic Fatigue Syndrome" (CFS) first appeared in the 1980s to describe a set of symptoms mainly characterised by persistent and unexplained fatigue. However, the name has been criticised for not adequately representing the full range of symptoms experienced by those affected and for downplaying the severity and complexity of the condition. Some people perceive "Chronic Fatigue Syndrome" as trivialising the illness and perpetuating misconceptions that it's merely a state of being tired or lazy. This has contributed to the stigma surrounding the condition, making it harder for patients to be taken seriously and receive proper care and support. Additionally, the lack of a universally agreed-upon definition for CFS has led to inconsistencies in diagnosis and research, which has hampered progress in understanding the illness.
In response to these concerns, a movement began advocating for the use of the term "Myalgic Encephalomyelitis" (ME) as a more accurate representation of the illness. The term "Myalgic Encephalomyelitis" was first used in the 1950s to describe an outbreak of a similar illness at the Royal Free Hospital in London. The term "ME" highlights muscle pain (myalgia) and inflammation of the brain and spinal cord (encephalomyelitis) as key features of the condition, providing a more comprehensive understanding of its complexity.
Over the years, there has been a push to use the term "ME" or a combined term "ME/CFS" to better reflect the nature of the illness and reduce stigma. This movement has gained traction, particularly within the patient community and among some healthcare professionals and researchers. The use of "ME" or "ME/CFS" acknowledges the multifaceted nature of the illness and emphasises the need for further research, improved diagnostic criteria, and better support for those affected.
Despite these efforts, the debate over the terminology continues, and the use of "Chronic Fatigue Syndrome," "Myalgic Encephalomyelitis," and "ME/CFS" still varies across different countries, research studies, and medical guidelines. However, the growing recognition of the limitations of the term "Chronic Fatigue Syndrome" and the increasing adoption of "ME" or "ME/CFS" represent important steps towards improving public understanding and reducing the stigma associated with this debilitating condition.
Self-care and balanced lifestyle
Managing ME/CFS often involves a combination of self-care and maintaining a balanced lifestyle. Pacing activities, ensuring adequate rest, and setting realistic expectations can help prevent relapses and reduce the impact of symptoms on daily life.
Mental health and ME/CFS
The psychological aspects of ME/CFS, including stress, depression, and anxiety, can exacerbate symptoms and complicate the management of the condition. It's crucial to address mental health concerns and seek appropriate support to promote overall well being.
Advocacy for funding, research and support
Advocacy efforts play a vital role in increasing funding for ME/CFS research, promoting awareness, and providing support for affected individuals and their families. Lobbying government agencies, participating in awareness campaigns, and supporting ME/CFS organisations can help drive change and improve the lives of those with the condition.
Further information and resources can be found at: Top-Tips-for-Doctors-3.pdf (doctorswith.me).