NHS England Launches New E-learning Module on ME/CFS!

Forward-ME were offered two places at last week's British Association of Clinicians in ME/CFS (BACME) conference and Russell Fleming from the ME Association was able to attend. At the conference, and as part of the Delivery Plan on ME/CFS, a new e-learning module from NHS England was launched. It is one of three continuing professional development (CPD) modules that will be produced.

Russell Fleming, Head of Communications.

The DHSC Delivery Plan on ME/CFS

Producing e-learning material for healthcare professionals is one of the key actions from the Department for Health and Social Care (DHSC) Delivery Plan on ME/CFS.

At the BACME conference we received a presentation from Lee McGill (Head of Long-Term Conditions and Palliative & End of Life Care) who is a civil servant working for the DHSC. His team are now completing the analysis of all responses to the Interim Delivery Plan consultation which closed in October 2023.

The DHSC received 3,338 responses to the public consultation, mainly from individuals and charities, and organisations in the public and private sectors, as well as other professional bodies and organisations. They didn't expect so many people to take part and had to bring in more experts to help analyse all the responses which took longer to do than anticipated. However, the Final Delivery Plan is expected to be published in Autumn 2024.

When I asked if the Delivery Plan on ME/CFS would be affected by any change in government at the general election, Lee responded that he felt a new government would welcome it, and he would be lobbying for it to be used regardless. He said that too much work had gone into it, that the process had consulted widely and received views from a great many people, and the resulting plan would be hard to ignore.

NHSE E-learning for Healthcare: An introduction to ME/CFS

Work to develop three E-learning modules has been overseen by Dr David Strain (Medical Adviser to Action for M.E.) and Essi Niitymaki (TEL Education Content Senior Project Manager, NHS England). Also involved were a group of clinicians with an interest in ME/CFS, charity representatives including me, and people with lived experience of the condition. It followed the work we had all been involved with in developing the DHSC Delivery Plan on ME/CFS.

An ‘Introduction to ME/CFS' is the first module to be released and is aimed at anyone – healthcare professionals and the wider public – as well as people with symptoms. Work will continue on the final two modules later this year.

I should mention that the team working on these modules did not see the final version of this first module. Indeed, the launch at the BACME conference caught me by surprise. But the full team were informed about the launch this morning, and I was granted permission to share the module with you.

• You should be able to obtain online access to the module, by clicking the button below, although you will probably need to register beforehand. I have asked for it to be made more easily accessible and I hope this will be done soon.
• In the meantime, I have taken the NHSE ELFH module and reproduced it below. I felt it was important that we can all read what has been developed and I will find a place for it and the other modules on the charity's website to encourage others to use these resources. Unfortunately, I couldn't reproduce the video, but the transcript is provided.
• If you do have problems accessing the module via the link in the button below, I am afraid I can't help at this time. But I will update the blog when easier access becomes possible, and when I have learned how the module will be promoted by NHSE ELFH.
• If you have any comments about the module please email: Feedback@meassociation.org.uk. Thank you.

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 is ME/CFS?

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a potentially serious condition which affects everybody differently.

Despite the fact that there is an estimated 250,000 people of all ages in the UK living with the ME/CFS, there is much that remains unknown about it. 

• Symptoms
• Causes
• Management

A. What is the impact of ME/CFS?

The severity of the condition ranges from the mildly affected (who are able to go to school, college or paid employment albeit in a modified or limited way) to the severely affected, who are often housebound and/or bedbound.

But in all cases, it impacts a person's ability to go to work or school, and the family life, social life, and emotional wellbeing of both the individual and their families. Because of how little we know about the condition, it often takes a long time before people get their diagnosis and access to the support they need. 

Video: Louise's experience of living with ME/CFS

B. Is ME/CFS a new disease?

Although ME/CFS is a relatively recent diagnostic term (first used in the 1980s), there have been many reported cases of ME-like disease in history.

• Crimean Fever: Florence Nightingale.
• Epidemic Fatigue Illnesses.
• ‘Chronic fatigue syndrome': Lake Tahoe: ‘Raggedy Ann syndrome'.

C. How does the stigma around ME/CFS affect people?

Anything ‘new’ ‘emerging’ or ‘unproven’ in medicine is often met with scepticism and/or stigmatised as being psychosomatic. Multiple sclerosis (MS), for example, was regarded in this way until diagnostic lumbar puncture tests and MRI scans were able to prove its existence.

ME/CFS is currently still an emerging disease with no proven cause or diagnostic test. As a result it has been subject to the same scepticism and labelled with terms which undermine its impact on people. Including: 

• Raggedy Ann syndrome.
• fatigue illness.
• yuppie flu.
• chronic fatigue.

This has led to an unprecedented amount of stigma around the disease.

Q: How do you think this stigma may impact individuals, their families and their healthcare professionals (HCPs)?

Select the correct options, then Submit.

• Active discussion and disagreement between HCPs who have differing views on ME/CFS.
• Strained relationship between HCPs and people with ME/CFS.
• Lack of understanding may cause breakdown of personal and family relationships.
• Individuals with ME/CFS may feel like they are not believed.

D. End of Chapter: Key Points

• ME/CFS impacts 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.
• There are 4 symptoms essential for a diagnosis but there are many other symptoms in other parts of the body.
• We do not know what causes ME/CFS.
• There is no definitive clinical test for ME/CFS.
• There is no proven cure for ME/CFS; management focuses on improving quality of life.
• Although the ME/CFS diagnosis is a relatively recent term there have been many reported cases of ME-like disease in history.
• Stigma around the disease has negatively impacted the health and wellbeing of individuals and their relationships with HCPs.

Chapter 2: Causes of ME/CFS

Although there are some core features, people with ME/CFS can present with many different symptoms and abnormalities.

For this reason, there is no definitive test for diagnosis, and it is suggested that there may be several different causes for the symptoms of ME/CFS, in the same way that lots of different bugs can cause a cough and a fever.

In this chapter we will explore some of the current theories around possible causes of ME/CFS. 

A. Post-viral disease.

We know that viruses can cause a whole range of symptoms when a person has the original infection.

One theory is that ME/CFS symptoms occur as the result of a virus which is still hidden in the system and continues or returns to cause symptoms later (in the same way that virus that causes chicken pox can recur as shingles).

Many viral infection triggers have been linked with ME/CFS, including:

• Epstein Barr virus (glandular fever).
• Ross River virus.
• Coxiella burnetti.
• Human herpes virus (HHV) 6a.
• West Nile fever.
• n-SARS-CoV2 (long COVID).

B. Immune system changes.

Autoimmune illnesses are diseases in which the immune system attacks healthy tissues in the body. Examples include rheumatoid arthritis and psoriasis. Like ME/CFS, these:

• are more common in women 
• are associated with increased inflammation 
• have a similar age distribution

Research studies have found immune system changes in some people with ME/CFS.

Elevated cytokine production

Cytokines are proteins that are produced by the immune system and regulate behaviour of other cells. They are produced in response to inflammation or infection. Many people with ME/CFS have abnormally high levels of these regulators. These exaggerate the response to triggers, whether food, environment or stress. 

Low-functioning Natural killer (NK) cells

Natural killer (NK) cells help the body fight infections. Many patients with ME/CFS have poor NK cells so they have a reduced ability to fight and clear infections.

Activated B-cells and plasmocytes

B-cells are responsible for producing antibodies against viruses. Some people with ME/CFS have overactive B-cells. It is uncertain what these are producing antibodies against and whether this means there is an underlying infection or an ongoing autoimmune response.

C. Exagerated stress response.

When we get physically or emotionally stressed the brain produces chemicals which stimulate the adrenal gland. These regulate the body's reaction to stress, digestion, energy usage and mood.

People with ME/CFS can have a more exaggerated stress response, although it is uncertain whether this is a cause of symptoms or a response to something else going on in the body.

Select the image to find out what the impact of this is:

• Steroid hormones, such as cortisol and adrenaline, get out of balance and negatively impact many body systems and functions, like the immune response.
• Cortisol should lower inflammation and calm down exaggerated immune responses. 
• A low cortisol activity, or even a normal cortisol in the presence of increased inflammation (pseudonormal), may lead to chronic activation of the immune system.
• In ME/CFS, cortisol is usually at the lower end of the normal range, which may be inappropriate in the setting of inflammation, however, cannot be used to diagnose and treat ME/CFS.

D. Imparied mitochondrial function.

Research show us that some people with ME/CFS have been demonstrated to have impaired mitochondrial function.

Mitochondria are the ‘batteries’ of the cells, responsible for turning the sugar we eat into energy. They do so by a series of chemical reactions. Some people with ME/CFS have defects in the conversion of sugar into energy.

We do not know whether abnormal mitochondrial function is a cause of the symptoms of ME/CFS or is a result of another problem. Therefore, any treatments that may be developed offering mitochondrial stimulation may not have any benefit to people with ME/CFS.

E. Other theories.

There are several other theories around the cause of ME/CFS which are still under investigation.

1. Impaired immunoglobulins.

• We produce immunoglobulins in response to infections.
• Some people with ME/CFS (and also with long COVID) have very high or low levels of these immunoglobulins.
• The amount of immunoglobulin in the blood however, does not necessarily mean that they are effective.

2. Microclots.

• Little blood clots have been identified in people with long COVID. These prevent oxygen and nutrients being delivered to all of the tissues. Some studies have identified these blood clots in people with ME/CFS as well. 
• The clots appear to have a different composition to ordinary blood clots and we do not know whether treatment with anticoagulants, like we do in other causes of blood clots, would have any effect in people with ME/CFS.

3. Microbiome.

• Microbiome are micro-organisms that live on or in our body. People with ME/CFS tend to have a lower variety of micro-organisms, particularly the ‘healthy' bacteria that we need to function normally.

• Our microorganisms are dependent on a number of things including what we eat and drink.

• It is not known whether dietary changes early in ME/CFS (eating high carbohydrate foods or drinking caffeine drinks) may be responsible for the changes. 

4. Genetics.

• ME/CFS is increased in people with relatives who also have the disease. It is not known whether this is because they share genetics or a common environment.

• There are multiple studies underway. If there are genetic markers of ME/CFS, understanding what these genes do, may offer the opportunity to develop future tests and treatments. 

F. End of Chapter: Key Points

• There are many, as yet unproven theories as to what causes ME/CFS symptoms including:
  • post-viral conditions
  • immune system changes
  • impaired mitochondrial function
  • exaggerated stress response
  • dysregulated immunoglobulin levels
  • microclots
  • altered microbiome
• It is possible that there are several different things that may result in the symptoms of ME/CFS, in the same way that lots of different bugs can cause a cough and a fever.

Chapter 3: Symptoms of ME/CFS.

A. Core Symptoms.

Because we don’t know what causes ME/CFS we do not have a definitive clinical test for it. Diagnosis is based on the following 4 core symptoms being present for more than 3 months, but have not been there since birth:

• fatigue.
• post-exertional malaise (PEM).
• sleep disturbance.
• cognitive difficulties.

1. Debilitating Fatigue.

Fatigue is a symptom that most people experience at some point in their life. The fatigue of ME/CFS is so extreme that people are unable to participate in routine activities that were possible before becoming ill, such as work, school, social life and/or personal life. The debilitating fatigue of ME/CFS is worsened by activity and is:

• not caused by excessive cognitive, physical, emotional or social exertion,
• 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 the hallmark symptoms of ME/CFS and interferes with the ability to lead a ‘normal' life. 

The worsening of symptoms can follow minimal cognitive, physical, emotional or social activity or activity that would previously have been tolerated.

In most other diseases, people feel better after exercise; the opposite is true for people with ME/CFS. For these people even minimal physical, mental or social exertion may cause PEM.

ME/CFS-related PEM:

• 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 (excessive sleepiness)

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 multitasking.

B. Other Symptoms.

There are many other symptoms that are often experienced by people with ME/CFS. But, because they can also be caused by other conditions they can only support a diagnosis of ME/CFS if the core symptoms are present.

1. Orthostatic Intolerance (Symptoms that occur when sitting or standing upright).

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.

This can limit a person’s ability to perform day-to-day activities such as visiting the shops or even standing up long enough to prepare a meal or getting dressed. 

2. Heightened Sensitivities 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 for no apparent reason, including:

• sensitivity to touch.
• unexplained muscle pain.
• headaches.
• eye pain.
• abdominal pain.
• joint pain without redness or swelling.

4. Flu-like symptoms.

Flu-like symptoms are common, including: 

• sore throat.
• tender glands.
• nausea.
• chills or muscle aches.

5. Irritable Bowel Syndrome.

Irritable bowel syndrome (IBS) is a diagnosis in its own right. It features a group of symptoms including:

• pain or discomfort in the abdomen 
• changes in bowel movements

ME/CFS and IBS frequently coexist. They are not the same disease but are thought to have similar risk factors. No one really knows why.

C. Children and Young People.

Diagnosing ME/CFS in children and young people is particularly challenging.

• Symptoms such as persistent fatigue, cognitive impairments, and post-exertional malaise are often subjective and can be mistakenly attributed to other common conditions in children and young people. 
• They may also be dismissed as “psychosomatic”, related to lifestyle factors or manifestations of attention seeking behaviour, either by the young person or by their carers.

The chance of a partial or full recovery is better in children and young people with ME/CFS than in adults.

Therefore, it is important that the diagnosis is considered sooner rather than later. The sooner treatment is offered, the greater the chance of getting better.

D. Support.

Initial assessment will involve blood tests to exclude other causes of the symptoms. The results of these tests will more often than not, return as ‘normal’. This can be distressing to an individual if they are not aware that this is expected in suspected cases of ME/CFS.

• People with ME/CFS will usually have normal blood results. They need to know this is what to expect.
• Very often being told that ‘everything is normal’ can be upsetting. It can also damage relationships with family, friends and/or carers who may hear ‘normal’ and doubt the diagnosis.
• It is important to reassure the person with ME/CFS that ‘normal tests’ do not mean there is nothing wrong, just that we don’t have the right tests yet.

E. End of Chapter: Key Points

• There are 4 symptoms essential for a diagnosis of ME/CFS: debilitating fatigue, post-exertional malaise (PEM), sleep disturbance and cognitive difficulties (brain fog).
• Other symptoms include: muscular and joint pain, flu-like symptoms, intolerance to alcohol or to certain foods and chemicals, heightened sensory sensitivities and orthostatic intolerance.
• A series of tests need to be performed to exclude other diagnoses, however these tests are usually normal.
• Normal test results does not indicate that symptoms are psychosomatic.

Chapter 4: Managing ME/CFS.

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.

It is important that people do not try alternative and/or unproven therapies without first seeking medical advice.

A. Referral.

When possible, individuals should be referred to a specialist ME/CFS service.

These specialist teams may contain a range of medical and nursing specialists, occupational therapists, physiotherapists, dieticians and/or nutritionists and clinical psychologists who have an interest in managing this complex disease.

• The role of the specialist team is to develop a person-centred care and support plan.  
• By exploring what a person with ME/CFS can accomplish and the impact of this on their 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 the plan is to facilitate as good a life as possible, however, even with optimum management many remain significantly debilitated by ME/CFS.
• Unfortunately, in the absence of proven treatments, or evidence-based interventions there are significant differences in what the ME/CFS services look like around the country.

B. Self-Management.

There are 3 key elements of self-management that a person can try whilst awaiting an appointment with the ME/CFS service.

1. Energy Management (Energy Conservation or Pacing).

• The first key element is not to use more energy than they have, often described as an ‘energy envelope'. 
• People should be advised to:
  • manage their daily activity and not ‘push through' their symptoms.
  • plan activity balanced with the need to rest and convalesce.
  • prioritise their ‘important' activities whether that be work, school or family life.

2. Activity Management.

• Unlike other conditions, progressive exercise programs do not benefit people with ME/CFS.
• Exercise, whether physical, mental or emotional, can trigger post-exertional malaise (PEM). People experiencing PEM, should not undertake exercise outside of their programme of activity.
• It is important to ensure that any exercise is bracketed well within the ‘energy envelope' and does not result in a worsening of symptoms.

3. Diet.

• A healthy balanced diet with good fluid intake may lessen fatigue and improve exercise tolerance.
• The natural response of many people with ME/CFS when experiencing symptoms is to reach for high-energy, high-carbohydrate or caffeine-based supplements. These are known to cause peaks and troughs in energy levels and exacerbate symptoms.  
• There is no evidence to support routine vitamin or mineral supplements or probiotics as either a cure or even symptomatic relief for people living with ME/CFS.

 C. End of Chapter: Key Points

• There is no clinically-proven cure or treatment for ME/CFS. 
• Management focuses on improving quality of life through personalising coping strategies addressing energy management, diet and lifestyle changes.
• When possible, individuals should be referred on to a specialist ME/CFS service where a person-centred care and support plan can be developed. 

Chapter 5: Information and Support.

Our understanding of ME/CFS is still developing, which is why it is essential that HCPs 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 informed and signposted to sources of help and support. This session provided an overview of what we know about ME/CFS.

1. Support charities 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. View website.
• 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. View website.
• 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. View website.

2. Guidance.

• The ME Association provides guidance on the diagnosis and early management of people with ME. They also have a very clear review of the latest guidelines from NICE with information specifically written for the public. View website.
• 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. View website.

3. 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. View website.

4. 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. View website.
• Study PRN provides a free online CPD module composed of 10 clinical cases assessing your knowledge of ME/CFS. View website.

5. References.

• The National Institute for Health and Care Excellence. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. London: NICE, 2021. View website.

End Of Session.