About ME/CFS
"ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a complex and debilitating neurological condition that affects the CNS (Central Nervous System - comprising the brain and spinal cord) which serves as the body's central control system.
"Consequently, any number of systems within the body can be affected, both physically, cognitively and emotionally. Amid the COVID-19 pandemic, individuals with ME/CFS were categorised under Group 6 (Medically Vulnerable) due to their compromised immune systems.
"Most health providers have never seen a severely affected ME/CFS patient/person unless they provide home health services."
In ICD-11, it is classified under Chapter 8: Diseases of the Nervous System
~ World Health Organisation
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Main Symptoms
Symptoms vary from person to person, and are very wide ranging, but the condition is characterised by 4 hallmark symptoms (per the 2021 NICE Guideline on ME/CFS):
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.
Fatigue in ME/CFS typically has the following components:
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feeling flu-like, especially in the early days of the illness
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restlessness or feeling 'wired but tired'
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low energy or a lack of physical energy to start or finish activities of daily living and the sensation of being 'physically drained'
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cognitive fatigue that worsens existing difficulties
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rapid loss of muscle strength or stamina after starting an activity, causing, for example, sudden weakness, clumsiness, lack of coordination, and being unable to repeat physical effort consistently.
PEM (Post-Exertional Malaise)/PESE (Post-Exertional Symptom Exacerbation):
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The worsening of symptoms disproportionate to the activity, and can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated.
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Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse.
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Post-exertional malaise may also be referred to as PESE (Post-Exertional Symptom Exacerbation).
Unrefreshing sleep or sleep disturbance (or both), which may include:
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feeling exhausted, feeling flu-like and stiff on waking
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broken or shallow sleep, altered sleep pattern or hypersomnia
Cognitive difficulties (sometimes described as 'brain fog') which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multi-tasking.
Further Symptoms
Those who live with ME/CFS often develop multiple hypersensitivities. Symptoms vary from person to person and it does not follow that a person will suffer from all of them.
Sensitivities may include:
The Standard Five Senses, with sensitivity to:
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light
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noise, or certain sounds (misophonia)
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tastes
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aromas
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touches / textures against the skin
Most struggle with environmental temperatures that are too high for them, while a minority struggle in lower temperatures.
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artificial colours and preservatives, artificial sweeteners
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alcohol sensitivity
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caffeine
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too much salt, sugar or acidity
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gluten sensitivity and lactose intolerance
Chemicals in:
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home environment e.g. chemical cleaners, air fresheners, perfumes, dishwasher solutions on crockery, laundry detergents/softeners - smell and skin contact, etc.
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outside environment e.g. chlorine in pools can burn delicate skin, chlorine tastes in drinking water, air fresheners and cleaning detergents in public facilities, etc.
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People with ME/CFS often require much lower doses of medication for them to be effective. Starting on child level doses is often the way to begin, then ramp things up as necessary.
Multiple Chemical Sensitivity Disorder is something worth looking into for anyone with ME/CFS.
ME-pedia - their Common Symptoms page is suitable for gaining a good working understanding of the condition’s symptoms.
Comprehensive Symptom List - Dr. Bernes’ List, Phoenix Rising - a useful tool when seeking a diagnostic assessment via your GP, or to help you keep track of your condition’s progression as time goes on.
NICE Guidelines?
A NICE guideline is an evidence-based set of recommendations developed by the National Institute for Health and Care Excellence (NICE) for healthcare professionals in England and Wales. These guidelines aim to improve the quality of care, promote health, and prevent ill health by providing guidance on things like prescribing medicines, recommending treatments, and ensuring patient safety.
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The ME/CFS NICE Guidelines
This is NICE's official page for the Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management NICE guidelines
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However, the ME Association has uploaded a searchable copy of the current ME/CFS NICE Guideline.
Co-Occurring/Co-Morbid/Co-Existing Conditions
(The above terms are often used interchangeably)
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Fibromyalgia
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Restless legs syndrome, periodic limb disorder
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Postural orthostatic tachycardia syndrome (POTS)
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Neuro-mediated hypotension
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Irritable bowel syndrome
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Food intolerances and atopic conditions
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Mild anxiety
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Mild depression
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Hypermobility Ehlers–Danlos syndrome
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Myofascial pain syndrome
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Small fibre neuropathy
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Sicca symptoms
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Chronic pelvic pain, endometriosis
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Interstitial cystitis
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Hashimoto thyroiditis; hypothyroidism controlled clinically)
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Migraine
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Mast cell activation disorder, eosinophilic esophagitis
Causes & Triggers
Although causes and triggers are often discussed together, they are fundamentally different. Causes refer to the underlying systemic factors of a condition, while triggers are specific events or circumstances that provoke the condition.
While currently classified as a condition of the CNS, ME/CFS is believed to have multiple contributing causes affecting various body systems, including the nervous, endocrine, and immune systems. Ongoing research aims to uncover these causes, triggers, and potential treatments, but there is currently no cure, only condition and lifestyle management strategies.
While identified triggers include long-term intense stress (physical, mental, emotional) and post-viral factors, studies continue to explore how the brain and body convert fuel into energy and the roles of the gut and immune system.
UK Research:
Decode ME is a groundbreaking study being led by professor Chris Ponting of the Medical research council human genetics unit at the university of Edinburgh.
Findings from the initial first wave questionnaire covering 17,000 participants were published online on August 24th 2023.
With 25,000 participants across the UK and an extended completion date of August of 2025, the study is looking for differences in a person's DNA that make them more likely (or less likely) to get ME/CFS. This, in turn, should help pinpoint what causes the condition.
Exacerbation
Used by some interchangeably, these terms refer to when your symptoms get worse for a period of time.
We suggest using the terms as follows:
Flare up - Medium to Debilitating PEM/PESE for a period of one to three days
Relapse - Debilitating PEM/PESE for periods of four days to several months.
Anything beyond several months, and the condition may be significantly worsening and it's time for re-evaluation.
Flare ups and relapses are a common part of ME/CFS and can be caused by a number of factors such as an infection or other illness, or an unplanned activity. Sometimes there's no clear cause.
Healthcare professionals and others caring for you can help you manage, or even stave off, a setback by:
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Including more breaks with your current levels or activities, i.e. pacing
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Allowing you bed rest and taking on daily living tasks for you such as housework and healthy meal preparation
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Maintaining a peaceful living environment
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Helping you learn relaxation breathing techniques
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Encouraging you to engage in gentle bi-hemispheric activities such as knitting and crochet or playing the piano
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Staying well hydrated and avoiding heavy or unhealthy foods
You may find there are times when your symptoms get better, as well as times when symptoms are more severe. The aim of condition and lifestyle management is to reduce the severity of the peaks and troughs that naturally come with the condition.
How will this affect my life?
ME/CFS is a life-changing condition, and both you and those around you will need to make changes and accommodations.
Disability Rating Scales for ME/CFS
Currently the NHS has a 4 increment scale for the severity of ME/CFS in individuals which is useful to know. However,
the ME Association created a new 10 increment scale in April, 2024 working on percentages of disability, which many with ME/CFS may find more useful.
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Currently the NHS has a scale for the severity of ME/CFS in individuals which is useful to know, and is as follows:
Mild – you’re able to care for yourself but may have problems moving around; you may be able to go to work or school, but will not have energy to do much else
Moderate – you may have difficulty moving around easily and problems carrying out daily activities; you may not be able to work or continue with your education and may need to rest often; you may also have problems sleeping at night
Severe - you may not be able to do any activity, or only be able to do very basic daily tasks, such as brushing your teeth; you may be housebound or even bedbound and need a wheelchair to get around; you may also have difficulty concentrating, be sensitive to noise and light, and take a long time to recover after activities involving extra effort, such as leaving the house or talking for long period
Very Severe - you may have to spend all your time in bed resting and be fully dependent on carers; you may need help eating, washing and going to the toilet; you may be extremely sensitive to light and noise; you may be unable to swallow and need to be fed using a tube
Illness Severity Definitions
The ME Association have created a new 10 increment scale. You can download a pdf of the scale document here
“As the 10 descriptors are concentrating on disability rather than symptoms and ill-health, they are covering practical tasks like standing, walking, washing, food preparation and eating. This is because these are the kind of everyday tasks that are asked about when disability levels are being assessed for DWP benefits, etc.”
~ ME Association
Very Severe
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100% Disability
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90% Disability
Severe
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80% Disability
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70% Disability
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Severe to Moderate
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60% Disability
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50% Disability
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40% Disability
Moderate
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30% Disability
Moderate to Mild
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20% Disability
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10% Disability
Recovered
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0% Disability
The ME Association Disability Rating Scale, April 11, 2024
Adjusting to and living with acquired disability and accessibility needs is a much bigger topic that we intend to come to in a future section of this website. Please check back for updates.
Diagnosis
ME/CFS cannot be diagnosed with a single test, but doctors follow clear guidelines to identify it. Besides reviewing your medical history, blood tests and urine tests are conducted to eliminate other conditions with similar symptoms, which can prolong the diagnostic process. In certain areas such as Bolton, specialised ME/CFS clinics under the Neurology Long Term Conditions Department offer assessment and lifestyle management programs after these initial tests.
Guidelines from NICE (the National Institute for Health and Care Excellence) say doctors should consider diagnosing ME/CFS if all of the following 4 hallmark symptoms apply and are not caused by another condition:
Your GP may consult a specialist if they're unsure about the diagnosis or your symptoms are severe.
We recommend utilising the Comprehensive Symptoms List in the Useful Tools section above to note your symptoms and take to your appointments.
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fatigue (extreme tiredness)
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sleep problems
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issues with thinking and concentration
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symptoms are made worse by physical or mental activity
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muscle and joint pain
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headaches
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sore throat
The doctor making the diagnosis may also ask you about other symptoms that can affect people living with ME/CFS, such as:
Currently, there is no definitive treatment for ME/CFS. Instead, condition and lifestyle management focuses on lifestyle adjustments to prevent overexertion and minimise symptom exacerbation. Additionally, treatment and management of coexisting conditions is prioritised.
While gentle movement (where possible) and psychological support are important for maintaining physical and mental health, they should not be considered treatments for ME/CFS - historically, patients with misdiagnosed ME/CFS have faced dismissal and inadequate treatment, often attributed to psychological rather than physical causes. Also, inappropriate treatments like GET and CBT have been harmful, exacerbating conditions or wrongly blaming patients for their biomedical illness.
NICE updated their guidelines in 2021 following advocacy from the ME/CFS community and medical professionals, notably removing GET and CBT from recommended treatments. NICE recommends personalised treatment plans based on individual symptoms.
Our general Treatments, Adjustments and Adaptations page contains information relevant to all 3 conditions, including. Follow the link to Treatments, Adjustments and Adaptations below for more.
But first, here are some things specific to this condition…
For those with a diagnosis, after an initial consultation with the consultant Neurologist, the ME/CFS Clinic at the Breightmet Health Centre in Bolton offers a Lifestyle Management programme that is based largely on the book: Fighting Fatigue: Managing the Symptoms of CFS/ME. The book itself is designed for both those living with ME/CFS and for those who care.
Lifestyle Management, and much more, is covered further in our Treatments, Adjustments and Adaptations Section. Follow the link below.
Please refer to the Symptoms section at the top of the page, under multiple hypersensitivities, for awareness about ME/CFS and dosage.
Commonly prescribed medications by GPs and Neurologists include:
Amitriptyline - a low-dose tricyclic anti-depressant that is used to treat Amitriptyline is a medicine used for treating neuralgia and migraines. It is also used as an anti-depressant. It is known to help improve the quality of sleep.
Duloxetine - an SNRI anti-depressant that is used for nerve pain, depression and anxiety. It is also used to treat urinary incontinence.
Treatments, Adjustments and Adaptations
Our general Treatments, Adjustments and Adaptations page contains information relevant to all 3 conditions, including:
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Lifestyle Management
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Pacing
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Massage therapy
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Hydro, physio, and Occupational Therapy
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As well as looking after your mental health & wellbeing
plus much more
Education & Support for people who care...
It is crucial that those who care about you educate themselves about your condition, how it affects you, and your evolving needs. Supportive moral and practical assistance should complement your own efforts to improve your quality of life. Encouraging them to visit this website is a good starting point. Over the next several months, we’ll be developing an information pack with input from our members to better support caregivers.
Of course, people who support you need support themselves, and we would love to hear suggestions of information and services you would like us to include in the caregiver pack too.
BBME Membership is open to people who support and care for those with ME/CFS, Fibromyalgia, or Long-COVID; membership is free to one caregiver from your support network.
Your Input Matters!
If you have suggestions for what should be included in this pack, please email us at: wellbeing@mesupportgroup.co.uk with “caregiver pack suggestions” in the Subject line.
Membership is only £10 per year
BBME Membership is open to people who support and care for those with ME/CFS, Fibromyalgia, or Long-COVID
Membership is also free to one caregiver from your support network.
