Myalgic encephalomyelitis or chronic fatigue syndrome (ME or CFS)

Information and advice for service users, carers and staff about ME or CFS.

ME or CFS is short for myalgic encephalomyelitis or chronic fatigue syndrome.

ME or CFS is a chronic, complex medical condition that can affect people to different degrees but typically causes significant difficulties with all aspects of daily living, family life, social life, emotional wellbeing, work, and education.

The condition often follows an acute infection and can fluctuate such that people may struggle more on certain days, or parts of the day, or during certain periods, for example weeks or longer.

Symptoms of ME or CFS

There are four main symptoms of ME or CFS:

• Debilitating fatigue that is worsened by activity.
• Post exertional malaise or symptom exacerbation (PEM).
• Unrefreshing sleep and, or sleep disturbance.
• Cognitive dysfunction, meaning problems with short-term memory, concentration, attention span, information processing, etc.

The symptoms of ME or CFS can be similar to other conditions, so it is important that if symptoms persist, you should make an appointment with your GP.  ME or CFS should be suspected if the four main symptoms persist for at least six weeks, there is a significant decrease in ability compared to pre-illness activity levels and it is not explained by another condition.

Other symptoms may include:

• Orthostatic intolerance and autonomic nervous system dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position.
• Temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold.
• Neuromuscular symptoms, including muscle twitching and myoclonic jerks (abnormal limb movements).
• Flu-like symptoms, including sore throat, tender glands, nausea, chills, or muscle aches.
• Intolerance to alcohol, or to certain foods and chemicals.
• Heightened sensory sensitivities, including to light, sound, touch, taste, and smell.
• Pain, including pain on touch, myalgia (muscle pain), headaches, eye pain, abdominal pain, or joint pain without acute redness, swelling or effusion.

Diagnosing ME or CFS

Diagnosing ME or CFS is based on the symptoms you’re experiencing and by ruling out any other conditions that could be causing your symptoms; there isn’t a specific blood test for the condition. To rule out other conditions, your GP will ask about the symptoms you’re experiencing and your medical history; carry out a full physical examination, and you will need to have some blood and urine tests.

For a diagnosis the person must have experienced all of the four main symptoms for at least three months. Diagnosis should prompt a referral to an ME or CFS specialist team/service for confirmation of diagnosis and to develop a personalised care and support plan. For children this would be a paediatric ME or CFS specialist team.

How ME or CFS should be managed

There are a variety of aspects to managing ME or CFS. There is no cure but treatments and management strategies can alleviate symptoms. The management, care and support plan will be individualised to your needs at the time the plan is created. However, it should consider, where relevant, the following factors:

• Energy and activity management: a self-management strategy, supported by health care professionals, that aims to develop a realistic understanding of the amount of energy you have on a day to day basis as well as how to use this to try and meet your needs and reduce the risk of worsening symptoms due to exceeding your limits. This is likely to change over time and adjustments should be made as needed.
• Incorporating physical activity and exercise: this can be introduced if you are able to make some improvement and feel ready and want to increase your activity level or include exercise into your routine. This type of plan should only be developed with the ME or CFS specialist team input and oversight.
• Rest and sleep: advice around promoting relaxation and rest as part of the daily management of ME or CFS. You should also receive personalised sleep management advice to develop good sleep habits whilst recognising that this needs to be balanced with daily rest and sleep patterns should be changed gradually.
• Physical functioning and mobility: this should be included in care and support plans to try and prevent deterioration of physical functioning and mobility. This can include strategies to help maintain flexibility, joint mobility and balance. Risk of complications from immobility should also be considered.
• Medicines: should not be offered on a curative basis but may be used to relieve some symptoms. Prescribers should be aware that people with ME or CFS may be more intolerant of drug treatment.
• Dietary management and strategies: highlights the importance of adequate fluid and food intake, based on the well-balanced nutritional guidance offered in the NHS eat well guide.
• Cognitive behavioural therapy: can be discussed and offered for managing symptoms, improving functioning and reducing the distress that can be associated with any long term condition with the overall aim of improving quality of life.

Severe ME or CFS

Where a person is living with severe or very severe ME or CFS it is important for health professionals to acknowledge and manage a broader range of symptoms which may include constant pain, difficulty eating or swallowing, difficulty communicating, gastrointestinal difficulties and visual disorders.

In addition to the ways to manage ME or CFS mentioned above, people with severe or very severe ME or CFS are likely to have additional needs as they may be housebound/bedbound, require a low-stimulus environment, communication support, hydration or nutrition support and physical interaction that accounts for difficulties with touch sensitivity.

Social Care

Anyone living with ME or CFS may need support at home and should be able to access a social care needs assessment. Where appropriate, you should be able to get support with daily living activities, mobility and access to aids and adaptations to help support you to maintain your independence.

Education and employment

ME or CFS is likely to impact on a person’s ability to engage in work or education. Speaking to an employer or educator about ME or CFS, and more specifically any needs in relation to a care and support plan, should enable an employer or educator to put into place any reasonable adjustments that would assist you in returning or continuing with your work or education.

Children and young people

For children and young people much of the aforementioned information applies, however, there are a few additional things to consider:

If CBT is offered, this must be adapted to the child’s emotional and cognitive stage of development. It is also helpful to have parental or carer input during the therapy.

If maltreatment is suspected, it should be treated in the same way as any other child with a chronic illness or disability. However, any safeguarding assessment should involve a health and social care professional that has training or experience in ME or CFS.

When it comes to education it is important that children and young people are properly supported. Parents should be advised that they can request an education, health and care plan for their child. It is worth considering that education should not be the only activity in a child’s day, this needs to be balanced with family or home life and other social activities.

Living with ME or CFS

The symptoms of ME or CFS often make it hard to cope with normal day-to-day activities due to the physical and cognitive symptoms that you may experience. Living with ME or CFS can therefore be challenging and difficult at times.  Not only can you be affected physically, but your mental and emotional wellbeing can also be directly affected, which in turn can have a negative effect on your self-esteem.

So you may find it useful to talk to other people living with ME or CFS about all the constraints on normal life that this illness causes. For more information use the buttons below.

Personal Experience

Seeing as I wasn’t a city banker, driving a VW golf whilst talking on a mobile phone the size and weight of a brick, I really couldn’t relate to the term ‘yuppie flu’.

Thankfully, that term isn’t used anymore and we know it today as Chronic Fatigue Syndrome or M.E, which is quite a mouthful, so CFS or M.E is the abbreviation commonly used. For those of us curious about the meaning of the term M.E, here’s the technical bit. M.E stands for myalgic encephalomyelitis, which is derived from the following – the word myalgic means muscle pain or tenderness (‘my’ is a shortened form of ‘myo’, which means muscle, ‘Algic’ is the adjective form of ‘algia’, which means pain).  The word encephalomyelitis means inflammation of the central nervous system, that is, the brain and spinal cord (‘encephalo’ refers to the brain, ‘myel’ means spinal cord and ‘medula oblongata’. ‘Itis’ means inflammation).  Ok, now we’ve got that out of the way, I’d like to tell you my story.

I was born in 1977 and was first diagnosed in 1995 after 3 years of symptoms.  These symptoms began in the summer of 1992 and manifested following a very stressful time, namely the death of my beloved Nanna in the March and my mock exams in the May.

At first, especially because of my symptoms and my age, in 1992 my GP diagnosed me with glandular fever.  After a few months had gone by he doubted that diagnosis and carried out the test, which was to look for Epstein-Barr, which is the virus that causes glandular fever. The test was negative, so he concluded it must have cleared and that I now had developed post-viral fatigue syndrome (PVFS).  I continued to struggle into my first job as an Office Junior in a solicitor’s office.  They had 2 offices at opposite ends of the town and my main task was to walk between the two with the internal mail. This was exhausting for me because of my symptoms. The other Office Junior at the other branch was sacked, so I took on double the workload.  I was often isolated in a back room, the post room which was not good for a social person like me. This deterioration in health led to spending the whole summer bed ridden; I remember it well because I missed the whole of Wimbledon (which I love to watch every year).  I did have a portable TV in my room but couldn’t stay awake for long.

To give you an idea of the kind of person I am, I’d like to tell you a few things about myself. I’m a perfectionist, if I make one mistake on a piece of paper, I can’t just cross it out, I have to start over again – even if the mistake is the last word on the page. I have often been described as having OCD (so what if I have an A to Z CD collection, square up my ruler, pen and notebook and categorise tinned food!).

I have been interested in and very good at sports, right from junior school. I was the captain of the netball team and that was repeated at senior school, in fact I captained every girls’ team and was the first and only girl to be allowed on the football team. The P.E quote in my Record of Achievement states that I was an excellent sportswoman and always gave 110%, which I was and still am extremely proud of.

There’s a reason I’m telling you this, it’s because I want to emphasise the devastation I have felt, and very much still feel, at not being physically able to participate competitively in high intensity sports, such as squash, football and netball. Sport was always an outlet for my aggression, without it I have internalised so much anger.  I manage to train now and again with a local netball team but man, do I suffer afterwards.  By the next session, I still haven’t recovered from the last. I often get injured and spend weeks out at a time. The next day, I can hardly move and ache literally from head to toe, even my fingers hurt.

Specifically, I get joint pain, stiffness, swelling, redness and heat. I have the pressure point indicators for Fibromyalgia (FM), therefore I have a diagnosis of that too. There’s debate that as CFS or ME and FM crossover so much and there is commonly a co-existence, that maybe they are the same thing. Research is still very much needed, especially as there are no diagnostic tests for CFS or ME.  Blood tests are done routinely to rule out other illnesses, it’s a process of elimination. If I never have another blood test, it will be too soon!  I felt like a pin cushion and guinea pig in those early days.  It’s hard to describe the frustration and disappointment every time those results came back negative.  I longed for them to show hypothyroidism, lupus, Lyme disease or a virus – anything I could use an explanation.  There are times I thought I was going mad.  The term psychosomatic is something I have heard over the years.  With my limited understanding I used to think that meant I was a hypochondriac and that my brain was somehow inventing things.  Later, I came to understand that it meant my mental health was affecting my physical health, that there was a knock-on effect.  I have mixed feelings on this to be honest with you.  There are times I feel that they are linked – following counselling, therapy and DBT I have thought that my physical symptoms have improved.  Yet, other days I can feel on top of the world and still be in pain or exhausted.  So, it’s very difficult to give a definitive answer.  Maybe I would say that the mental wellness has improved the CFS or ME in an overall sense and reduced the intensity of symptoms, i.e. long-term.  But on a day-to-day basis it fluctuates.  What I’m trying to say is working on my mental wellbeing has helped but by no means has it ‘cured’ the physical side.

Other ways it has impacted me include inability to concentrate for long periods.  I have loved to read since learning to read at 4 years of age, before starting school.  Now I struggle to read 5 to 10 pages at a time, so novels sit around a long time.  Sometimes, I don’t even go back to them because I lose interest, never really ‘getting into a book’, which I find really annoying.  This extends to being able to study, write and listen.  Some days I feel like my brain just isn’t working in a cognitive sense, many call it ‘brain fog’.

The ‘fatigue’ part doesn’t even describe the level of exhaustion I can feel.  You’ve probably heard sufferers say ‘it’s like walking through treacle’, I’ve always used the analogy, ‘like wading through wet cement’.  When people flippantly say ‘Yeah, I get tired too’ I want to say to them, ‘you have NO idea what tired is’.  There are times when I have walked to the summit of Cat Bells, Helvellyn and even the highest, Scafell Pike.  Yet, there are times I’ve set off down the path and turned back after 100m.  That’s how polar opposite I can feel. Naturally, that is so confusing and frustrating (notice there’s a lot of frustration going on), I ask myself, ‘why can I do it one time and not another?’, as it doesn’t make sense to me or the people around me.

The fatigue is so central, that people may overlook the other effects, which include; clumsiness, poor memory, IBS (irritable bowel syndrome), bladder problems, insomnia, over-sleeping, unrefreshing sleep, night sweats, sensitivity to noise and smells, swollen or sore glands, swollen or tender lymph nodes, nausea, headaches, susceptibility to infections, flu or viruses, poor circulation, poor temperature regulation, depression, mood swings, painful periods, dizziness, balance problems, carpal tunnel syndrome, pins and needles, numbness, tingling, GORD or acid reflux or indigestion, skin allergies.  This isn’t just a list of symptoms; this is a list of my symptoms.  At least 10 of these that are co-existent, it’s like your whole system is dysfunctional.  I would like to say that I’ve gone from having symptoms constantly to having periods of relapse, these might last for several months, conversely so can the relapses.  When I relapse now, I do the best I can manage each day and keep in mind that it will pass.

I am sorry if I have painted a bleak picture, but rather I have tried to paint a realistic, honest one.  Learn and work with your limitations, beginning with acceptance.  Self-care and management are vital.  There is hope.  I have learned (and am still learning) to have realistic expectations and don’t put too much pressure on yourself.  Be kind to yourself.