What is ME/CFS?
Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are both terms used for the same condition. The cause of ME/CFS is uncertain, but it can be triggered by some infections. It is a long-term condition that can affect multiple systems in the body, and as a result can cause a number of different symptoms. There is no diagnostic test for ME/CFS, so it has to be diagnosed by ruling out other medical conditions that may cause similar symptoms.
The most typical symptom of ME/CFS is debilitating fatigue. Other problems are Post Exertional Malaise or Post Exertional Symptom Exacerbation, unrefreshing sleep and cognitive difficulties. It is a changeable condition that can affect everyone differently, with symptoms varying in severity, and coming and going with little warning. It is estimated that 250,000 people in the UK are living with ME/CFS. It can have a significant impact on a person’s ability to live their daily life, and on quality of life. There is currently no cure for ME/CFS, but strategies can be used to manage and live well with the condition.
ME/CFS is categorised by the NICE guidelines as Mild ME/CFS, where someone may care for themselves and do some light domestic tasks, to moderate, severe and very severe, where someone would be in bed all day and be dependent on care.
The symptoms and management of long COVID, ME/CFS and Post Viral Fatigue are very similar, and as such much of the general advice for each condition can be equally applicable to the other.
The following slides with voiceovers will help you understand dysregulation and how this contributes to the multiple symptoms in primary fatiguing conditions.
The whole slide show is approximately 30 minutes long, but we have split it up into 3 parts to help concentration levels and retention of information. Please watch in order, one to three.
Watch as many times as you need and also show to your family so they have a better understanding of your symptoms.
Do not worry if you don’t completely understand everything as there is quite a bit of medical language but we are hoping it will help explain and validate your symptoms to yourself and others.
We would like to acknowledge BACME, the British Association of Clinicians in ME/CFS and their original contributors for the background information on current theories, we have based these slides on.
Living with ME/CFS can be difficult. If you feel that you need support the following ‘Living with a Chronic Condition’ course may be helpful.
If pain is your main symptom you may find Pain Management - Cwm Taf Morgannwg University Health Board helpful
Some people with severe ME/CFS may be at risk of malnutrition, due to loss of appetite. The Association of UK Dietitians has produced an information page for people with ME/CFS: Myalgic Encephalomyelitis (or Encephalopathy) / Chronic Fatigue Syndrome (ME/CFS) | British Dietetic Association (BDA)
Cognitive Behavioural Therapy (CBT) is recommended for ME/CFS; CTM are pleased to advise that you can now self-refer to access: SilverCloud. Making Space For Healthy Minds
For many people fatigue is a significant factor – The Royal College of Occupational Therapists have the following advice - www.rcot.co.uk/conserving-energy
Slides and script have been developed by Sally Collins, Physiotherapist.