ME/CFS is classified as a neurological illness by the World Health Organisation and the UK National Health Service.
Approximately 250,000 people in the UK suffer from ME/CFS, an umbrella term for a neurological disease or spectrum of diseases..
ME/CFS is a real and disabling condition. It affects all age groups and social classes. It affects both sexes although it seems to be more common in women. Children and adolescents can be particularly badly affected.
There is currently no scientific cure and often insufficient care and support for the majority of people with the disease.
Symptoms can include muscle fatigue, pain, weakness and aching joints, problems with memory and concentration, sore throat, digestive problems, sensitivity to light and noise, painful glands, chest and abdominal pain and headaches. The key symptom is Post Exertional Malaise (PEM) whereby exertion or exercise causes a worsening of all the symptoms and it may take many days or weeks to recover from this ‘payback’.
Muscle fatigue and weakness can result in people being unable to perform everyday tasks such as cooking, or shopping, or even washing and dressing. Most people experience “brain fog” and find it hard to concentrate or to read. Others find it difficult if not impossible to use computers and electronic devices, with screen time limited to a few minutes at a time.
Patients with severe ME/CFS can be house bound and in some cases even bed bound. Some patients recover sufficiently well to return to work, although there may be times when the illness will be severe enough to prevent them from working.
The causes of the illness are not fully understood but the condition often starts after an infection such as ‘flu or glandular fever. It can sometimes follow a virus or bacterial infection or occur after surgery, trauma or prolonged periods of stress. Research into the exact causes of ME/CFS is continuing. The new Biobank study will be analysing samples from thousands of patients using very sophisticated technology to gain a better understanding of the causes and inform how best to treat the patients. One thing is clear. The illness is not “all in the mind” although it definitely affects the brain. It is important to realise that, just like other neurological illnesses, ME/CFS has physiological and biochemical causes. Like with many chronic long term illness, people become socially isolated making the disease even more challenging.
Diagnosis and Treatment
Diagnosis and good advice from an expert doctor can help manage the illness. There is, as yet, no treatment that will effect an immediate cure. The NICE guidelines for the treatment of ME/CFS are currently under review and revised set of guidelines is expected in 2020/21.
Most general practitioners, as they will admit, are not experts on this condition. Speaking to an expert, such as an ME Trust Doctor can help with both diagnosis and treatment.
There are no definitive tests for ME/CFS but a diagnosis can be made from a patient’s medical history after a detailed consultation and performing tests to exclude other disorders – for example blood tests to check for coeliac disease thyroid, liver function, kidney function, a full blood count and screening for auto-immune disorders. Sometimes medication can be prescribed to help alleviate symptoms and to help with managing sleep patterns and pain management. Diet can also have a role to play: ensuring the best nutrition and avoiding certain foods can make a positive difference. Many people have found therapies such as relaxation and mindfulness helpful, but it is important to realise that what is helpful to one person may not be helpful to another.
It is important to maintain a balance between rest and activity and pacing is important. Exercise should not be strenuous and should be taken only after medical advice. Every ME/CFS patient is an individual and will benefit from individual, tailored advice from doctors, nurses, physiotherapists and other therapists.
As one of the charities supporting people with ME we have been actively campaigning for NICE to remove the recommendation of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) in the guideline for ME/CFS.
Patient surveys conducted by charities and groups including Forward-ME have repeatedly shown the harm that can be caused by these therapies, even when delivered by an ME Specialist. While this guideline is under review we are calling for NICE to remove the recommendation and add a health warning stating the risks associated with GET and CBT.
One of the main considerations during the guideline review is the evidence for GET in particular. It is therefore appropriate that they take this action in response to the legitimate questions and concerns that have been raised over its safety and effectiveness.
We are pleased that the new draft NICE guideline appears to have taken these concerns into account. We look forward to the new guideline due to be published in April.