Guidance for community-based healthcare practitioners
We are pleased to share the latest NHS England E-Learning module, which is part of the DHSC Delivery Plan on ME/CFS and aimed at community healthcare professionals.
The is the second of a three-part series of continuing professional development (CPD) resources. The final module will be about severe and very severe ME/CFS and is expected by the end of April.
Emma Jefferies
Communications and Social Media Lead,
The ME Association
NHSE E-learning for Healthcare
The E-learning modules have been overseen by Dr David Strain (Consultant to the Exeter ME/CFS specialist service) and Essi Niitymaki (Technology Enhanced Learning(TEL) Education Content Senior Project Manager, NHS England).
Also involved were clinicians with an interest in ME/CFS, representatives from DHSC and other government departments, charity representatives (including from the ME Association), and people with lived experience. It is part of the work that stakeholders have been developing with the DHSC for the Delivery Plan on ME/CFS (expected by the end of March).
The module ‘ME/CFS: guidance for community-based healthcare practitioners' is the second to be released. It aims to inform and empower community-based healthcare practitioners with the knowledge and tools needed to effectively diagnose, manage, and support patients with myalgic encephalomyelitis/chronic fatigue syndrome.
For more information, and to access both modules; please visit this link: https://www.e-lfh.org.uk/programmes/mecfs-elearning/
Access to the NHS CPD module
- You should be able to obtain online access to both modules, by clicking the buttons below, although you will probably need to register beforehand.
Survey:
NHSE TEL ME/CFS – Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome Elearning Survey
There is an opportunity to provide feedback on the contents of the module. Everyone is encouraged to complete the survey – as Essi Niitymaki (TEL Education Content Senior Project Manager, NHS England) says ‘the more data we can collect the better!’
It shouldn’t take too long to complete, so please do take time to provide your opinions and feedback:
Introduction
This session provides an introduction to the complex nature of ME/CFS. It explains what ME/CFS is and provides an overview of the potential causes, diagnostic criteria and management strategies.
| Chapter 1: What do we know about ME/CFS? |
| Chapter 2: Assessment and diagnosis |
| Chapter 3: Management and support |
| Chapter 4: ME/CFS and acute illness |
| Chapter 5: Summary and further information |
Introduction
ME/CFS is a long-term health condition which is poorly understood and remains a challenging diagnosis due to its multifaceted nature and the absence of definitive diagnostic tests. It is currently under-diagnosed, particularly amongst people from ethnic minority communities and those from socially disadvantaged communities.
ME/CFS is a condition that can significantly affect an individual's ability to perform routine activities and their life quality for which there is no proven cure.
All healthcare workers play a role in supporting ME/CFS patients through informed, compassionate care.
I'm Tom and I'm 54 years old. I'm a father of 4 adult children and I live by the coast with my partner.
Until relatively recently, I had a very active job as a mental health mentor for young people.
Now that seems like a world away.
My problems started 4 years ago. I had a brief illness during which I had severe headaches and I slept for almost a week.
I developed a persistent lack of energy. I had joint and testicular pain and migraines that pervaded way beyond that brief illness.
Before I got ill I was an endurance cyclist, a runner and a forest school teacher. I was extremely active and strong.
In fact, I was fitter at 49 than I was in my 20s!
Now I'm in almost constant pain and can do almost none of the physical activity that I used to love.
Riding a bike gives me a shooting groin pain for several days after traveling just a few metres.
After very short walks my joints become painful and I become unstable.
I have pain in my ankles, knees, hands, shoulders, neck and I'm overwhelmingly tired if I exercise at anything more than a sedate pace.
I suffer very sudden, all-encompassing crashes in energy which leave me exhausted and craving sleep.
Initially my doctor advised an ultrasound scan, but the waiting time was so long I ended up paying for one myself privately.
I also had blood tests, which came back with a diagnosis for an underactive thyroid, for which I was prescribed levothyroxine.
I also had abnormalities in my blood which indicated I was having blood coagulation problems.
I was given antibiotics for a testicular problem as well as very strong painkillers, which ended up causing other side-effects.
I became unhappy with my GP's advice because they just prescribed meds for the individual symptoms, rather than looking at the whole.
My new GP is much more proactive in seeking answers. It was they that first suggested my symptoms could indicate ME/CFS.
They also advised that I become the expert on myself and my symptoms.
ME/CFS affects my whole life. I'm now no longer able to ride a bike, which has been a part of my work for the last 20 years.
I'm only able to manage two or three hours of work a day, and within this period I must be extremely careful about how I use my limited energy resources as if I overdo it, I can barely speak.
I used to play an active part in my family's life. I cycled everywhere with my children, but now I'm forced to drive everywhere.
I recently qualified for a disabled blue badge, which does help, but even that was after quite a protracted fight to qualify.
I can also suffer periodic bouts of incontinence, and I have constant gastric problems, including chronic hiccups forty or fifty times a day, every day.
This makes being in public extremely problematic.
My advice for someone who thinks they may be experiencing symptoms of ME/CFS is to go for blood tests immediately and become the expert on yourself.
Identify and work on minimizing the exacerbation of your symptoms. This may mean learning to say no to people.
Be kind to yourself and allow yourself time to recover.
To anyone supporting a loved one coping with the condition, I would say be patient with them.
It may affect them mentally in many ways, but it's important to realize that they're not doing this on purpose.
Celebrate successes and support them during the not so successful times.
Remember, this is scary for them, so listen and don't judge.
It's likely that they're trying their very best with what they have.
As for me, I want what most people want for themselves – to live a fulfilling life and to help people.
I want to be self-sufficient, and I want those around me to feel loved and cherished by me.
Ultimately, I would love to get my energy back and live a fuller life.
But right now that's beyond my control.
I would love for there to be a cure, and that there be an understanding that ME/CFS is a very real and a severely limiting condition.
Until then, I wish that those suffering are treated with compassion and understanding rather than left feeling guilty and inadequate.
ME/CFS is a complex, multi-system, chronic disease which can affect many systems of the body (such as the immune, central nervous and autonomic nervous system).
The first session in this programme: An introduction to ME/CFS, provided an overview of what we know about the condition.
1. How is ME/CFS diagnosed?
Although there are a wide range of symptoms in people with ME/CFS, the condition is currently diagnosed based on the presence of 4 symptoms [1]:
- debilitating fatigue
- post-exertional malaise (PEM)
- unrefreshing sleep and/or sleep disturbance
- cognitive difficulties (sometimes described as ‘brain fog')
There is no definitive diagnostic test, so diagnosis relies on a clinician's assessment of symptoms and differentiation from other possible conditions
Guidance on assessment and diagnosis in community-based care will be discussed in more detail later in the session.
2. What causes ME/CFS?
It is not clear what causes ME/CFS. In many cases, symptoms are thought to have been triggered by infection, but it is not simple post-illness fatigue.
Possible disease mechanisms include:
- impaired immunoglobulins
- microclots
- autonomic nervous system dysfunction
- genetics
Although an individual’s presentation tends to be consistent and consistently complex over time, there is a significant amount of variability between individuals with the disease giving weight to the idea that ME/CFS represents several different diseases all with similar symptoms
For more information about potential causes see the session: An introduction to ME/CFS.
3. How is ME/CFS treated?
There are no evidence-based treatments nor a cure for ME/CFS.
Management will focus on improving quality of life through:
- self-management approaches. For example: energy management, activity plans and dietary factors
- symptom control
- agreeing personalised coping strategies
Guidance on management and support in community-based care will be discussed in more detail later in the session.
4. What is the prognosis of ME/CFS?
The prognosis for ME/CFS varies greatly.
- Children and adolescents may have a better outlook, with some achieving full recovery.
- Adults, especially those with longer illness durations, are less likely to return to their previous health levels.
- Early and accurate diagnosis and the right specialist intervention can play a crucial role in improvement.
- Early and effective activity management plays a crucial role in improvement.
- Individuals who have ME/CFS can be prone to relapses when they contract other illnesses or infections.
ME/CFS is a fluctuating condition, symptoms can change unpredictably in nature and severity over a day, week or longer.
The disease has a spectrum of effect from the mildly affected (who may be able to maintain school, college or paid employment through specific adaptations and carefully managed activity), to the severely affected, who are bedbound and reliant on the care of others.
People with mild ME/CFS:
- care for themselves and do some light domestic tasks (sometimes needing support).
- may have difficulties with mobility.
- are likely to be still working or in education, but to do this they have probably stopped all leisure and social pursuits.
- often have reduced hours, take days off and use the weekend to cope with the rest of the week.
People with moderate ME/CFS:
- have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities.
- have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours.
- generally have poor quality and disturbed sleep.
People with severe ME/CFS:
- are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth)
- have severe cognitive difficulties
- may depend on a wheelchair for mobility
- are often unable to leave the house or have a severe and prolonged after-effect if they do so
- may spend most of their time in bed
- are often extremely sensitive to light and sound
People with very severe ME/CFS
- are in bed all day and dependent on care
- need help with personal hygiene and eating
- are very sensitive to sensory stimuli
- may not be able to swallow and may need to be tube fed
ME/CFS can affect activities of daily living, family life, social life, emotional wellbeing, work, and education for both the individual and their families.
Compromised immune responses
ME/CFS patients often exhibit immune system dysfunction, which can leave them more susceptible to infections. This can also result in their recovery from infections being slower and more complicated.
The impact of ME/CFS on acute conditions will be discussed in more detail later in the session.
Stigma
The inappropriate framing of ME/CFS as a psychosomatic, behavioural and/or psychological condition, along with a lack of single proven pathophysiological mechanism is responsible for some of the associated stigma.
Other contributors include that it is invisible with no obvious physical manifestations, and historically an overly dualist approach to all health conditions has led doctors to think that all those conditions without physical signs are “all in the mind”.
This stigma challenges the lives of people living with ME/CFS by affecting mental health, social interactions, medical care, and employment, creating a significant burden on people already struggling with a debilitating condition.
The origins of stigma around ME/CFS is discussed in more detail in An introduction to ME/CFS.
Inadequate care
Unfortunately, in the absence of proven treatments, or evidence-based interventions there are significant differences in funding for, and therefore the ability to provide adequate ME/CFS services around the country.
Often other non-ME/CFS symptoms are not fully considered and dismissed as additional manifestations of ME/CFS.
It is essential to stay informed about current research and to apply evidence-based practices in care strategies. Empathy and understanding is equally important in improving patient outcomes.
This session aims to equip community-based healthcare practitioners with the knowledge and tools needed to effectively diagnose, manage, and support individuals with ME/CFS and those close to them, ensuring a holistic and patient-centred approach.
Although there are a range of biochemical and physiological abnormalities in people with ME/CFS, the condition is currently diagnosed based on the presence of 4 symptoms (Reference: National Institute for Health and Care Excellence. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. London: NICE, 2021 https://www.nice.org.uk/guidance/ng206):
- debilitating fatigue
- post-exertional malaise (PEM)
- sleep disturbance
- cognitive difficulties
These symptoms should have been present for more than 3 months, but not been there since birth.
1. Debilitating fatigue
Fatigue is a symptom that most people experience at some point in their life, but the fatigue of ME/CFS is disproportionate and life-limiting, which, in combination with the other symptoms, results in people being unable to participate in routine activities that were possible before becoming ill, such as work, school, social life, and/or personal life.
It is possible to distinguish fatigue due to ME/CFS from over-work or over-tiredness by looking at its characteristics and associated symptom
The debilitating fatigue of ME/CFS is worsened by activity and:
- is not caused by excessive cognitive, physical, emotional or social exertion
- is not significantly relieved by rest
- would not have been present before the illness
2. Post-exertional malaise
Post-exertional malaise (PEM) (often referred to as ‘crashing') is considered to be one of the cardinal symptom of ME/CFS and interferes with the ability to lead a ‘normal' life.
This worsening and triggering of symptoms can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated.
With some diseases, patients experience symptom relief after exercise, the opposite is true for ME/CFS patients for whom even minimal physical, mental or social exertion may cause PEM.
ME/CFS-related PE:
- is often delayed in onset by hours or days (typically 12 to 48 hours, but possibly beyond 72 hours after the trigger)
- is disproportionate to the activity
- has a prolonged recovery time that may last hours, days, weeks or longer
- would not have been present before the illness
3. Sleep disturbance
Unrefreshing sleep and/or sleep disturbance, which may include:
- feeling exhausted
- feeling flu-like and stiff on waking
- broken or shallow sleep
- altered sleep pattern
- hypersomnia
4. Cognitive difficulties
Cognitive difficulties (sometimes described as ‘brain fog'), which may include:
- problems finding words or numbers
- difficulty in speaking
- slowed responsiveness
- short-term memory problems
- difficulty concentrating or multi-tasking
Although the diagnosis cannot be made until symptoms have been present for 3 months, NICE recommend the diagnosis should be suspected if all 3 of the following criteria are met:
- the person has had all 4 of the persistent symptoms for a minimum of 6 weeks in adults and 4 weeks in children and young people
- the person's ability to engage in occupational, educational, social or personal activities is significantly reduced from pre-illness levels
- symptoms are not explained by another condition
Therefore, diagnostic tests should not be delayed pending the 3-month threshold.
Other symptoms may also be associated with, but are not exclusive to ME/CFS.
1. Orthostatic intolerance
People with ME/CFS may experience symptoms on standing, or sitting upright from a reclining position, including:
- dizziness
- palpitations
- fainting
- nausea
- cognitive dysfunction
- increased fatigue
- pain
It is caused by the inability to correctly regulate blood pressure, cerebral blood flow and consciousness when changing from lying to sitting or sitting to standing.
It may occur with only marginal changes in measurable pulse and blood pressure. Postural orthostatic tachycardic syndrome (POTS) may co-exist, but many people with ME/CFS experience orthostatic intolerance without meeting diagnostic criteria for POTS.
If irregular blood pressure and heart rate initiate while in a supine position (lying down, face-up), then officially it is not orthostatic intolerance.
2. Heightened sensitivities and/or intolerances
People with ME/CFS can often be more sensitive and/or intolerant to:
- temperature: resulting in profuse sweating, chills, hot flushes, or feeling very cold
- alcohol and/or certain foods and chemicals
- light, sound, touch, taste and smell
The intensity of this can vary from mild to severe and debilitating.
3. Pain
People with ME/CFS can often experience pain, including:
- pain on touch (tenderness)
- myalgia
- headaches
- eye pain
- abdominal pain
- joint pain without acute redness, swelling or effusion
4. Neuromuscular symptoms
People with ME/CFS may experience neuromuscular symptoms, including:
- twitching
- myoclonic jerks (sudden, brief involuntary jerking of a muscle or group of muscles)
5. Irritable bowel syndrome
Irritable bowel syndrome (IBS) is a group of symptoms that occur together including:
- pain or discomfort in the abdomen
- changes in bowel movements
ME/CFS and IBS frequently coexist; they are not extensions of the same disease. No one really knows why.
6. Flu-like symptoms
Flu-like symptoms are common, including:
- sore throat
- tender glands
- nausea
- chills or muscle aches
There are 3 diseases that may have similar presentation to ME/CFS, in addition to a subset of long COVID, possibly in the region of 50%, which is often considered as a form of ME/CFS with a known trigger.
All 3 do not have specific diagnostic tests, however, it is important to differentiate as treatments may differ.
Fibromyalgia
Fibromyalgia or FM or fibromyalgia syndrome or FMS is a chronic, debilitating disorder where the cardinal symptom is widespread pain.
FM is often accompanied by other symptoms of ME/CFS, such as cognitive dysfunction or ‘fibro fog', unrefreshed sleep and fatigue. Many consider fibromyalgia and ME/CFS as different points on the same spectrum of disease.
Brain imaging and neuroimaging studies have shown FM to be a pain processing disorder involving altered pain processing in the central nervous system.
The pain and other symptoms of FM appear to be caused by neurochemical imbalances in the central nervous system that lead to a ‘central amplification' of pain perception.
It is possible to have ME/CFS and fibromyalgia simultaneously.
Mast cell activation syndrome
Mast cell activation syndrome (MCAS) is a disorder where mast cells are normal in number, but release excessive amounts of chemicals known as mast cell mediators including most commonly histamine.
The symptoms of MCAS can be very similar to that of ME/CFS, and therefore may be confused. The key difference would be a potential ‘allergic' trigger of symptoms rather than exertional. It is also possible to have ME and MCAS simultaneously.
Functional neurological disorder
Functional neurological disorder (FND) and ME/CFS share similarities in their presentation of symptoms such as fatigue, cognitive difficulties, and physical impairments, making differential diagnosis challenging for healthcare professionals.
Both conditions lack specific diagnostic tests, requiring diagnoses to be based on clinical criteria after the exclusion of other conditions. However, they are thought to have different underlying causes.
FND is understood as a disorder of nervous system functioning without a structural pathology, often conceptualised within a biopsychosocial model, implying that psychological factors, neurological dysfunction, and social influences interplay to produce symptoms.
Unlike ME/CFS, FND is rarely associated with PEM. FND also presents often with movement disorders and speech disorders which are not typical for ME/CFS. This distinction is crucial for healthcare workers as it influences the management strategies and therapeutic approaches tailored to each condition, underscoring the importance of accurate diagnosis and the recognition of the unique aspects of each illness.
It is crucial to differentiate ME/CFS from other conditions that may have similar initial presentations, such as fibromyalgia, depression, hypothyroidism, and sleep disorders.
A thorough history, physical examination, and appropriate investigations are essential to rule out these conditions.
1. Onset and course of symptoms
- Age at onset.
- Was it preceded by any identifiable disease or other trigger?
- Activity level pre-disease.
- Slow or sudden onset.
- Trajectory (getting better, worse and fluctuant) and speed of change.
2. Potential aggravating factors of symptoms
- Physical activity levels, predictability of fatigue or PEM.
- Whether cognitive activity triggers physical pain or fatigue or PEM.
- Impact of any infections on symptoms.
- Impact of environmental stress on symptoms.
- Any particular food stuffs (for example, high histamine foods or alcohol).
3. Impact on daily activities and quality of life
- Limitations to life.
- What did they previously enjoy?
- What is their activity goal?
- What are their essential everyday activities? What are the priority activities?
4. Cognitive symptoms
Common cognitive signs include:
- short-term memory lapses
- difficulty in concentrating or sustaining attention
- difficulty with processing incoming information and retrieving stored information
- trouble finding the right word, remembering or mixing up commonly used words
- problems with carrying out everyday tasks that involve any form of sustained mental activity
5. Sleep patterns and disturbances
- Difficulty getting out of bed in the morning; in ME/CFS it can be an extended period lasting several hours after awakening (dysania.)
- Excessive sleeping, inability to stay awake (hypersomnia).
- Difficulty falling asleep, staying asleep, and/or waking up too early in the morning (insomnia).
- Periodic limb movement disorder or nocturnal myoclonus; involuntary jerking or leg movements when sleeping or when falling asleep.
- Sleep phase shifting or sleep reversal (reversed or chaotic diurnal sleep rhythms, circadian abnormalities).
- Unrefreshing sleep (poor-quality sleep that doesn't relieve fatigue).
6. Any red flag symptoms
- Unexplained weight loss.
- Persistent fever.
- Significant lymphadenopathy.
- Focal neurological signs.
Patients with ME/CFS may, like any other person, be at risk of inflammatory or neoplastic conditions.
Red flag symptoms are rarely due to ME/CFS in the early phase.
Assessment
The first stage of any assessment is to exclude alternative causes of the symptoms through routine examination, history-taking and blood tests.
When planning these tests, consideration must be given to the knowledge that multiple trips to the primary care centre can itself trigger PEM.
This table shows the suggested tests and the alternative causes for fatigue they can confirm or rule out.
| Suggested test | Alternative cause for fatigue |
| Full blood count, B12, folate and ferritin | Anaemia, B12 or folate deficiencies |
| Urea and electrolytes | Chronic kidney disease, adrenal insufficiency |
| Liver function | Hepatic dysfunction, fatty liver disease |
| Thyroid-stimulating hormone (± free thyroxine) | Hypothyroidism |
| Plasma viscosity or ESR | Autoimmune conditions, polymyalgia rheumatica or vasculitis |
| C-reactive protein | Chronic infection (for example, TB, syphilis, Lyme disease) |
| Calcium and phosphate | Osteomalacia or vitamin D deficiency |
| Tissue transglutaminase IgA antibody (tTG) | Coeliac disease |
| HbA1c | Diabetes |
| Creatinine kinase | Chronic myositis |
Depending on presentation it may also be appropriate to consider additional tests
- Elevated markers of inflammation
An autoimmune profile (to excluded diagnoses such as rheumatoid arthritis or systemic lupus erythematosus; SLE) should be considered if markers of inflammation are elevated (CRP, ESR or plasma viscosity). - Abnormalities on the full blood count
Abnormalities on the full blood count may warrant B12 and folate, or iron studies should to be performed. - Low sodium
If the sodium is low consider Addison’s disease as a cause of fatigue and hyponatraemia. Check cortisol. - Abnormal calcium or alkaline phosphatase
If the calcium or alkaline phosphatase is abnormal, vitamin D level should be checked. - Abnormal liver function
Abnormal liver function tests should trigger an exploration for metabolic dysfunction-associated fatty liver disease (MAFLD: formerly known as non-alcoholic fatty liver disease) which often presents with fatigue, brain fog and weight loss; although rarely with PEM.
It is advised that you counsel an individual and those close to them prior to taking these tests that there is no diagnostic test for ME/CFS and that their test results are likely to be normal.
Clarify that ‘normal’ test results do not mean that there isn’t something wrong, or that the symptoms they are experiencing are all psychosomatic.
Reassurance that you will continue to support them in finding the right diagnosis and with the ongoing management of their condition is important for their wellbeing.
Diagnosing ME/CFS in children and young people presents a complex and multifaceted challenge as the core symptoms of ME/CFS can be mistakenly attributed to more common paediatric conditions or dismissed as psychosomatic or related to lifestyle factors.
Further, the increased healthcare visits often experienced may be mistaken as non-accidental injury, or factitious disorder imposed on another (FDIA: formerly known as Munchausen syndrome by Proxy).
Delayed diagnosis can lead to mismanagement of the condition, exacerbating the child or young person's suffering and potentially leading to a distrust of medical professionals.
If identified early, ME/CFS in children has been reported to have a better prognosis than in adults.
1. Presentation
Children and young people may present with a range of symptoms that overlap with other conditions, such as fibromyalgia, mononucleosis, or mental health disorders like depression and anxiety.
The absence of universally accepted diagnostic criteria tailored to the paediatric population adds to the challenge, necessitating a differential diagnosis process that requires sufficient time and a high degree of clinical judgement.
ME/CFS can profoundly impact a child's quality of life, affecting their physical health, psychological wellbeing, and social and educational development.
Healthcare providers must consider this as a differential diagnosis in children and young people with medically unexplained symptoms.
2. Diagnosis
Guided questions with the child or young person (CYP) and their carers can help with the diagnosis.
- What is the CYP able to do now?
- How does it compare to what the child or young person was able to do before?
- How long has the CYP been ill?
- Does the CYP feel better after sleeping or resting?
- What makes the CYP feel worse?
- What helps the CYP feel better?
- Is the CYP able to do what they want to do?
- What symptoms keep the CYP from doing what he/she needs or wants to do?
- Do they struggle initiating activities (less likely ME/CFS) or completing them (more likely)?
- Does the CYP ever feel dizzy or lightheaded?
- Does the CYP seem to have trouble remembering or focusing on tasks?
- What happens when the CYP tries to do activities that used to be normal?
Case study: Emily
Emily, a previously healthy and active 16-year-old student in sixth form college, began experiencing unexplained fatigue and recurrent sore throats approximately 5 months ago, following a bout of infectious mononucleosis (glandular fever).
Despite adequate rest, her symptoms persisted and intensified, leading to significant school absences and withdrawal from her extracurricular activities.
Emily's history
Emily reports a profound, persistent fatigue that worsens after physical or mental exertion and does not improve with rest. This can often occur a day or two after the exertion.
She presents after taking 4 weeks to be able to return to school after her mock A-levels.
She also experiences unrefreshing sleep, cognitive impairments (including difficulty concentrating and memory loss), headaches, and muscle pains. These symptoms have led to a substantial reduction in her daily functioning.
A thorough physical examination of Emily demonstrates no abnormalities.
What would be your next step?
- Prescribe an antidepressant
- Refer to a Child and Adolescent Mental Health Service
- Perform a series of blood tests including full blood count, HbA1c, thyroid function test, inflammatory markers, renal and hepatic function tests and TTG
- Diagnose ME/CFS and refer to the local service for counselling and activity management
- Reassure her, protracted recovery after infectious mononucleosis is common
See answer
Correct answer is 3.
You should perform a series of blood tests including full blood count, HbA1c, thyroid function test, inflammatory markers, renal and hepatic function tests and TTG. The symptoms are not suggestive of depression or psychosomatic illness.
Although a protracted recovery after infectious mononucleosis is common, at 5 months alternative diagnoses must be considered (indeed could/should have been considered from 6 weeks and diagnosed at 3 months). Epstein Barr Virus is a known trigger of ME/CFS.
Although ME/CFS is in the differential diagnosis at the moment, other causes must be considered including anaemia, diabetes or coeliac disease.
You have now reached the end of this chapter.
Let’s recap on the key points.
- Whereas many symptoms may occur in people with ME, the 4 core symptoms are debilitating fatigue, PEM, sleep disturbance, and cognitive difficulties.
- Although it takes 3 months before we can make a diagnosis of ME/CFS we should suspect the diagnosis much earlier. The sooner investigations and lifestyle modifications commence the greater the probability that quality of life can be preserved.
- The first stage of any assessment is to exclude alternative causes of symptoms through routine examination, history-taking and blood tests.
- The initial symptoms of ME/CFS in children and young people are often mistaken for alternative diagnoses, and incorrectly treated.
There is no clinically-proven cure or treatment for ME/CFS.
Management focuses on improving the person's quality of life through:
- agreeing personalised coping strategies
- lifestyle changes, for example: energy management, activity planning and diet
- symptom control
This chapter discusses strategies for management and support in community-based care.
Supportive care and information
Management should be person-centred and address physical, mental and social health.
A multidisciplinary approach
A multidisciplinary team (MDT) approach ensures comprehensive care.
Key team members may include:
- the individual’s GPs and/or consultants with a special interest in ME/CFS
- physiotherapists: for tailored activity and mobility programmes
- occupational therapists: for energy conservation strategies and adaptations at home or work
- psychologists/psychiatrists: for mental health support
- dietitians for nutritional assessment and support
When possible, individuals should be referred to a specialist ME/CFS service. These specialist MDTs have an interest in managing this complex disease.
Psychological support and counselling
ME/CFS can significantly impact mental health, leading to anxiety, depression, and social isolation.
Psychological support, including counselling and supportive cognitive behavioural therapy (CBT), can help patients to adapt and adjust to living well despite having ME/CFS and managing the considerable challenges they face.
Social support and community resources
GPs should be aware of local and national support groups and charities, such as:
These organisations provide valuable resources, support networks, and advocacy for patients and their families.
Any activity, whether physical, mental or emotional, can trigger post-exertional malaise (PEM) and/or other symptoms.
Unlike other conditions, progressive exercise programmes do not benefit people with ME/CFS. Recurrent episodes of PEM may accumulate and therefore this may cause permanent damage.
Guided by this, the key principles of management of ME/CFS are to plan, pace and prioritise activity.
1. Plan
The first step is to develop a person-centred care and support plan.
By exploring functional capacity and impact of the symptoms on the psychological, emotional and social wellbeing, a care plan can be agreed between the person with ME/CFS and their family or carers. The aim of this plan is to facilitate as good a life as possible, however, even with optimum management many remain significantly debilitated by ME/CFS.
2. Pace
Pacing is a cornerstone of ME/CFS management, involving balancing activity and rest to avoid exacerbations of symptoms.
Key strategies include:
- breaking tasks into smaller, manageable parts
- alternating periods of activity with rest
- using a diary to track symptoms and identify triggers
3. Prioritise
Prioritising activities of greatest importance whilst avoiding the activities which exacerbate symptoms the most can help with pacing and symptom management.
Effective symptom management requires a tailored approach based on the individual’s predominant symptoms.
Management can involve both pharmacological and non-pharmacological interventions.
Pain managment
- Non-steroidal anti-inflammatory drugs (NSAIDs) and paracetamol for mild pain.
- Short-term opioids may be used for moderate to severe pain, although should not be continued long term.
- Sumatriptan and/or other triptans may be used to relieve headache or migraine, consider referral to tertiary headache clinic after 14 days of symptoms in a single month.
- Tricyclic antidepressants (for example, amitriptyline), duloxetine or gabapentinoids (for example, gabapentin, pregabalin) for neuropathic pain.
- Referral to pain specialists for severe or refractory pain.
Sleep disorders
- Sleep hygiene education (regular sleep schedule, avoiding stimulants).
- Short-term use of sleep medications if necessary.
- Cognitive behavioural therapy for insomnia (CBT-I).
Cognitive dysfunction
- Cognitive rehabilitation techniques.
- Memory aids and organisational tools.
- Encouraging mental activities that are enjoyable but not exhausting.
- Pacing of cognitive activities.
Orthostatic Intolerance
- Increased fluid and salt intake.
- Compression garments.
- Medications such as fludrocortisone or midodrine in severe cases.
Some patients find relief with complementary therapies such as acupuncture, yoga, or meditation. While evidence is limited, these can be considered as adjuncts to conventional treatment.
One of the common goals of all of these is to improve vagal (parasympathetic tone).
Whilst the aim is for individuals to follow the NHS Eatwell Guide, with healthy eating and adequate fluid intake, nutritional adequacy should be assessed and monitored and nutritional support provided as necessary.
Patients with ME/CFS may be nutritionally compromised and are at greater risk of malnutrition due to fatigue, eating difficulties and gastrointestinal symptoms.
1: Unintentional weight loss and malnutrition
Malnutrition may occur in ME/CFS for reasons including:
- fatigue
- reduced appetite
- nausea
- altered sensitivity to tastes, smells, textures
- inability to shop, cook or feed oneself
- difficulty swallowing and chewing
- disrupted sleep and meal patterns
- food intolerances and/or restrictive diets
- financial constraints, due to reduced ability to work
Malnutrition can reduce:
- muscle strength and mobility
- mood
- energy levels
- quality of life
- independence
It is important to monitor weight and refer to a specialist dietitian if losing weight and at-risk of malnutrition.
2: Unintentional weight gain
Many people report weight gain, for example due to:
- reduced physical activity
- comfort, emotional or boredom eating
- eating or drinking in attempt to boost energy
Weight gain may impact mobility and emotional wellbeing in ME/CFS and people gaining weight unintentionally should be referred to a dietitian.
3: Gastrointestinal symptoms and food intolerances
Many people with ME/CFS report IBS-like symptoms, including constipation, diarrhoea, bloating and wind, as well as food intolerances.
It is important that other conditions such as coeliac disease and inflammatory bowel disease are ruled out first, before any dietary changes made.
If first-line diet changes fail to improve symptoms refer to a dietitian, who can assess for the suitability of a short-term elimination and reintroduction diet such as a low FODMAP diet. These are complex, restrictive diets, requiring supervision by a specialist dietitian.
There is no scientific evidence to support restrictive diets, such as ketogenic or gluten free diets, as a treatment for ME/CFS.
People following restrictive diets should be referred to a dietitian.
4: Caffeine and alcohol
Some people find that they are more sensitive to caffeine and alcohol, and feel better by reducing, or completely avoiding, these.
Swapping to decaffeinated tea and coffee may help. If caffeine affects sleep, avoid caffeinated drinks from afternoon.
5: Supplements
There are many claims that nutritional supplements help ME/CFS, including multivitamins, B vitamins, magnesium, omega-3s, carnitine, and co-enzyme Q10.
There is not enough evidence to support routinely taking supplements to manage, or cure symptoms.
Doses of vitamins and minerals above the recommended daily amount risk potential side-effects. However, people with ME/CFS risk vitamin D deficiency, particularly if they remain mostly indoors.
A daily supplement containing 10mcg (micrograms) or 400 IU (international units) vitamin D is recommended year-round.
There are several promising areas of research at the moment, including:
- exploring biomarkers for ME/CFS, which could improve diagnosis and guide treatment
- the impact of viral infections and the role of neuroinflammation in ME/CFS
- immunomodulatory therapies
- treatments targeting mitochondrial dysfunction
- investigating the role of gut microbiota
How can community-based healthcare professionals contribute to advancing ME research?
Community-based healthcare professionals can contribute to advancing ME/CFS research by:
- participating in clinical trials and research studies
- helping to recruit to larger multi-centre studies
- giving patients opportunities to engage in research opportunities
- staying updated on the latest research findings and integrating them into practice
You have now reached the end of this chapter.
Let’s recap on the key points.
- Pacing rather than a regular exercise plan, is essential to managing ME/CFS because it helps avoid exacerbations of symptoms, especially post-exertional malaise.
- Management focuses on improving the quality of life through personalised symptom management strategies.
- Sleep hygiene education and, if necessary, short-term use of medications is recommended for sleep disturbance.
- Unintentional weight loss can happen due to reduced energy and appetite, difficulty in shopping or cooking, and other related symptoms of ME/CFS.
ME/CFS can significantly affect the body’s response to acute diseases.
Altered immune response
ME/CFS patients often exhibit immune system dysfunction, which can affect their response to infections and acute diseases.
This may result in:
- a higher risk of contracting infections: due to immune dysregulation
- slower and more complicated recovery: due to their compromised immune responses.
Exacerbation of ME/CFS symptoms
Many patients report that an infection can worsen all aspects of ME/CFS. This may lead to:
- worsening fatigue: acute diseases can intensify the already severe fatigue experienced by ME/CFS patients
- PEM: The body’s response to fighting off an acute illness can trigger PEM, where symptoms worsen after physical or mental exertion
- increased pain and cognitive dysfunction: acute illnesses may aggravate pain levels and cognitive issues such as brain fog and concentration difficulties
Challenges in diagnosis and treatment
ME/CFS can complicate the diagnosis and treatment of acute diseases:
- symptom overlap: the symptoms of acute diseases may overlap with those of ME/CFS, making it difficult to distinguish between them
- medication sensitivities: people with ME/CFS may be more sensitive to medications than the general population, which can limit treatment options and complicate management of acute conditions. It is common to initiate medications at a lower dose and titrate slowly
Delayed medical interventions
Patients with ME/CFS might delay seeking medical help for acute diseases due to:
- healthcare aversion: past negative experiences with healthcare providers, including disbelief or minimization of their chronic condition, may lead to reluctance in seeking care
- logistical challenges: severe fatigue and mobility issues can make it difficult for patients to access medical facilities promptly
Impact on daily functioning
The combination of ME/CFS and an acute disease can further impair a patient’s daily functioning through:
- increased dependence on caregivers: acute illness can heighten the need for assistance with daily activities
- loss of work or school attendance: acute diseases may result in prolonged absences from work or school, exacerbating the socioeconomic impacts of ME/CFS
Psychological impact
The experience of dealing with an acute illness in the context of ME/CFS can take a psychological toll which may present as:
- increased anxiety and depression: the stress of managing an additional health issue can exacerbate mental health problems
- feelings of hopelessness: recurrent or prolonged illness episodes can lead to a sense of hopelessness and frustration
- concern about the future: in terms of recovery time from any relapse triggered by the infection
Many people with ME/CFS report a preceding viral infection, the most common being the Epstein Barr Virus, cytomegalovirus and human herpes virus 6A.
Similarities between long COVID and ME/CFS have highlighted the likelihood of a potential post-viral aetiology. The ME type long COVID is likely not a new disease but rather another form of post-viral ME/CFS.
Importantly, many people who live with ME/CFS have been exacerbated by COVID-19 suggesting the similarities in the process. There are also many commonalities in the management of ME/CFS or long COVID when people get concomitant diseases.
Certain elements are vital when managing acute illness in people with ME/CFS.
1: Prompt and accurate diagnosis
Comprehensive assessment: Thorough evaluation to differentiate between acute disease symptoms and baseline ME/CFS symptoms.
Early intervention: Prompt treatment to mitigate the severity and duration of the acute illness or dips in ME/CFS triggered by protracted illnesses.
2: Tailored treatment plans
Adjusting medications: Careful selection and dosing of medications to account for potential sensitivities. Many people with ME/CFS have hypersensitivities to medications.
Supportive care: Providing adequate hydration, nutrition, and rest to support the patient’s recovery.
3: Enhanced communication
Patient education: Informing patients about the potential impacts of acute diseases and the importance of early medical intervention.
Collaborative care: Ensuring clear communication between all healthcare providers involved in the patient’s care.
4: Holistic support
Psychological support: Offering counselling or mental health services to help manage increased anxiety or depression.
Social support: Mobilising community resources and support networks to assist with daily needs during acute illness episodes.
Admission to hospital can be stressful for any patient, however the noises, smells and recurrent interventions associated with hospital admissions can be devastating to a person with ME/CFS.
These should be avoided by early intervention whenever possible in the patient's own home. If hospitalisation is required this should be organised in advance.
The next session in this programme will offer guidance on the modifications that are required in order to manage a patient with severe ME/CFS in the hospital setting.
You have now reached the end of this chapter.
Let’s recap on the key points.
- ME/CFS patients often exhibit immune system dysfunction, making them more vulnerable to infections and prolonging recovery due to immune dysregulation.
- ME/CFS patients delay seeking treatment for acute diseases because of negative experiences with healthcare providers.
- Managing both ME/CFS and acute illnesses can significantly increase stress, leading to worsened mental health, including higher levels of anxiety, depression, and hopelessness.
- Tailored treatment plans are crucial in managing acute illness in ME/CFS patients, especially considering their heightened sensitivity to medications and the need for adequate supportive care.
This session explored the complexities of diagnosing and managing ME/CFS. It emphasised the importance of recognising the varied presentations of the condition, using a patient-centred approach, and involving a multidisciplinary team for optimal care.
While much about this illness remains unknown, staying informed about the latest research and applying evidence-based care practices is crucial. In the meantime, we stressed the value of empathy and understanding in enhancing patient outcomes.
Healthcare professionals play an essential role in providing informed, compassionate support to individuals with ME/CFS.
What do we know about ME/CFS?
- ME/CFS is a long-term, complex, multi-system, chronic medical condition which can potentially affect any system in the body.
- It is not clear what causes ME/CFS; in many cases, symptoms are thought to have been triggered by infection, but it is not simple post-illness fatigue.
- ME/CFS affects everyone differently; some people's symptoms are mild, whereas for others they can be debilitating. In all cases their life and relationships will be affected.
- It is associated with a significant degree of stigma, which may affect mental health, social interactions, medical care, and employment, creating a significant burden on people already struggling with a debilitating condition.
- Unfortunately, in the absence of proven treatments, or evidence-based interventions there are significant differences in funding for, and thus the ability to provide adequate ME/CFS services around the country.
Assessment and diagnosis
- There are 4 criteria essential for a diagnosis of ME/CFS: debilitating fatigue, post-exertional malaise (PEM), sleep disturbance and cognitive difficulties (brain fog).
- Other symptoms include: neuromuscular symptoms, flu-like symptoms, intolerance to alcohol, or to certain foods and chemicals, heightened sensory sensitivities, pain and orthostatic intolerance.
- Other conditions that may present with similar symptoms to ME/CFS include fibromyalgia and mast cell activation syndrome.
- The first stage of any assessment is to exclude any alternative cause of fatigue through routine examination, history-taking and blood tests.
- Advise an individual prior to taking these tests that there is no diagnostic test for ME.
- Normal test results do not indicate that symptoms are psychosomatic.
- It is important to recognise that a diagnosis of ME/CFS does not explain all symptoms.
Management and support in community-based care
- There is no proven cure nor evidence-based symptomatic treatments for ME.
- The focus is on improving quality of life through:
- agreeing personalised coping strategies addressing energy management, diet and lifestyle changes
- symptomatic control of aligned conditions, for example pain
- Managing ME/CFS is challenging but crucial for improving patients’ quality of life. By understanding the complexities of the condition, utilizing a multidisciplinary approach, and staying informed about emerging research, GPs can provide effective and compassionate care.
- Encouraging patient involvement in their care and supporting them with appropriate resources and interventions is key to managing this debilitating condition
ME/CFS and acute illness
- ME/CFS is a chronic condition that can significantly affect the body’s response to acute diseases. This may be due to altered immune responses, exacerbation of underlying ME/CFS symptoms, delayed diagnoses and medical interventions.
In order to minimise worsening of ME/CFS symptoms during infections prompt and accurate diagnosis is required. Tailored treatment plans can help to minimise the risk of hospitalisations.
- The presence of ME/CFS can significantly impact the management and outcomes of acute diseases. By understanding these interactions and implementing tailored management strategies, healthcare providers can better support ME/CFS patients through acute health challenges, ultimately improving their overall wellbeing and quality of life.
References
[2] The Migraine Trust. Calcitonin Gene-Related Peptide (CGRP) monoclonal antibodies.
Our understanding of ME/CFS is still developing, which is why it is essential that we stay informed about current and emerging research, so that empathic, informed and compassionate care can be provided, and outcomes improved.
Individuals, families and carers should also be supported to be informed and signposted to sources of help and support.
Support charities, services and organisations
- Action for ME is a charity supporting people with ME and explaining the disease to those with lived experience, their carers and bridging the gap between healthcare workers and patients.
- The 25% ME Group is a nationwide charity who campaign to raise awareness of ME/CFS and provide services to people affected by severe ME/CFS.
- The ME Association is a national charity that provides expert information and support to people with ME/CFS and Long Covid, invests in medical research, and is focused on improving healthcare.
- Tymes Trust is a national ME charity dedicated to children and young people with ME and their families.
- The Royal Devon University Healthcare NHS Foundation Trust ME/CFS Service offers support and advice.
Guidance
- The British Association of Clinicians in ME/CFS is a multidisciplinary organisation providing information, resources, education and networking opportunities to UK professionals to deliver high quality care to people living with ME/CFS.
Research
- Dialogues for a neglected illness (Dialogues for ME/CFS) was produced with a Wellcome Public Engagement Fund Award between September 2018 and December 2021. It explores aspects of ME/CFS from the perspectives of doctors, researchers, patients, carers, advocates and MPs.
Learning resources
- The NHSE Long COVID elearning programme provides an introduction to long COVID; starting with a definition, common symptoms, investigations and the impact on people with long COVID.
- Study PRN provides a free online CPD module composed of 10 clinical cases assessing your knowledge of ME/CFS.
References
[2] The Migraine Trust. Calcitonin Gene-Related Peptide (CGRP) monoclonal antibodies.