Today is World ME Day, this year it falls on the 12th May. This is quite a significant day, it is also the day of Florence Nightingale’s birthday. Why is this significant?
What is ME?
For many years ME (Myalgic Encephalomyelitis) was known as Chronic Fatigue Syndrome (CFS) and there has been much debate on the title, but there is no such debate on the debilitating effects of this long-term illness. ME/CFS, as it is now known, has been classified as a neurological disease and is associated with severe fatigue, which is often exacerbated after minor physical, mental and/or emotional effort – ‘post exertional malaise’.
“People don’t believe you when you tell them that you are ill, so you keep quiet, even when I had been admitted to hospital, as medics can often turn on you in contempt at the mention of ME.” – Carol Monaghan, UK MP, Hansard, 24 Jan 2018
So why is 12th May significant? Well, it is documented that Florence Nightingale, despite her many achievements, experienced severe bouts of fatigue and other symptoms that closely resembled ME/CFS.
ME/CFS can affect anyone and often occurs between the ages of 20 and 40. As well as fatigue, there are many other associated symptoms such as short-term memory problems, muscle pain, depression, anxiety, mood swings, headaches and sensitivity to light and noise.
All of the above symptoms can make it difficult to perform everyday tasks and even reading and watching TV can be affected. People with ME/CFS often talk about experiencing “brain-fog” – the inability to think clearly.
Because of the similar presentation of symptoms, other central immunological and neurological diseases are grouped together, including Fibromyalgia, Gulf War Syndrome and Multiple Chemical Sensitivity.
What causes ME/CFS?
There can be many factors that lead to ME/CFS, however, many patients can identify a trigger that changed their lives and signalled the start of the illness.
Following the outbreak of COVID-19, we are now seeing a condition known as Long COVID and many of those diagnosed have developed ME/CFS. It is important to recognise that conventional rehabilitation methods are not the best treatment recommendation and a different approach needs to be considered.
How Can Physiotherapy Help?
People with ME/CFS often struggle with everyday activities and their goals should be considered based on their needs. Physiotherapists can help people to achieve their goals and help them understand how to deal with the peaks and troughs they may experience.
- The goal is energy conservation to optimise function. The key is to work with their energy limitations to avoid triggering post-exertional malaise
- Help to develop a plan where goals are written so that progress can be monitored, every small achievement is a big step towards independence
- Advice on how best to exercise, no need to warm up, the key is to conserve energy. The main priority should always focus on function – getting through the day’s tasks is far more important than measuring how far a person can walk on a treadmill
- Teaching a patient how to breathe and cope with shortness of breath and periods of anxiety
- Suggesting aids and equipment that can make everyday tasks more manageable, such as the use of kitchen adaptations, shower chairs, reaching devices, or an ergonomic assessment of their workspace.
“Fatigue is what we experience, but it is what a match is to an atomic bomb”. – Laura Hillenbrand, author of Seabiscuit and Unbroken, An Author Escapes From Chronic Fatigue Syndrome, NYT, 4 Feb, 2011
What You Can Do?
Wear a blue ribbon to show your support and post on social media using the hashtag #LearnFromME.
Raising awareness of ME/CFS will reduce the stigma that people often encounter. Get fully informed so that you can contribute by reading more about ME/CFS on our Physiopedia page. As well as rehabilitation advice, you will learn more about the symptoms of ME/CFS, how it is diagnosed and the treatments that are available.