Posted on 09/05/2019

The science behind why M.E. does NOT make you “lazy”

The science behind why M.E. does NOT make you “lazy”

For years now, there has been an unfair “laziness” label attached to those who have been diagnosed with M.E. (also known as chronic fatigue syndrome), by others who do not fully understand the condition and this is something we want to help put right.

Around 17 to 24 million people are living with Myalgic Encephalomyelitis (M.E.) worldwide, making the condition far from uncommon, and as many as 25% of those have been diagnosed with a severe case. Yet despite these shocking figures, M.E. remains largely misunderstood, with many people wrongly assuming that symptoms associated with the condition make those living with it “lazy”.

M.E., or chronic fatigue syndrome, can be difficult for others to comprehend – especially as it is a health condition which is not immediately visible and has varying symptom severity. For this reason, we’ve looked into the science behind M.E. to help raise awareness of what it’s really like to live with and hopefully provide a better understanding of why those who have the condition are not “lazy” or “unmotivated”.

What is M.E.?

M.E. is a long-term condition that is characterised by exhaustion which cannot be cured through sleep or rest. It is sometimes known as chronic fatigue syndrome (CFS) or post-viral fatigue.

The symptoms and severity of M.E. are different for each individual. Whilst some people may develop mild or moderate symptoms others can experience severe cases which can seriously affect their everyday lives.

“M.E. can affect people of any age, ethnicity or background.”

As well as fatigue, the most significant symptoms for a diagnosis include: post-exertional malaise (PEM), muscle pain or fatigue, cognitive problems, irregular sleep and ongoing flu-like symptoms. PEM is the name given when symptoms of M.E. intensify due to physical or mental exertion that would be minor to other people. This can cause a severe drop in energy levels.

The science behind M.E.

It’s true that fatigue is one of the main symptoms of M.E., but do you know what causes the condition and its associated symptoms?

It’s important to understand that M.E. is a complex disease and has been found to affect many different parts of the body. As well as the immune system, irregularities have been found in the brain, the endocrine system, central nervous system and in the muscles of people living with M.E.

There is no single factor that has been found to cause M.E. However, suggested causes or triggers include:

  • Infection
  • Vaccination
  • Genetic predisposition
  • Trauma

In most cases, M.E. is triggered by an infection (or another problem in the immune system) in someone that is genetically predisposed. The condition then develops through different interrelating changes in the muscles, central nervous system and brain.

The cause of flu-like symptoms

As research continues, there has been an increasing amount of evidence to show that M.E. affects biological and physiological functions of the body. Most biomedical studies of M.E. focus on identifying and explaining these abnormalities in different bodily systems. Irregularities identified in the immune system include reduced natural killer cell activity and fluctuating levels of different cytokine cells. Both of these kinds of cells help to regulate your immune system and a change in their quantity or activity can lead to an increased threat to your immune system causing the flu-like fatigue and pain often seen in M.E. patients.

The cause of muscle pain and fatigue

Muscle research in M.E. patients has found mitochondrial abnormalities, including dysfunction and reduction of mitochondria activity. Mitochondria are structures in the cell that control your cellular energy. Therefore, a lack of function in these structures can lead to your body not producing enough energy and cause fatigue – the most common symptom of M.E. There have also been studies using exercise tests to prove that PEM and muscle pain or fatigue are not due to deconditioning or inactivity in M.E. patients.

“More women are affected by M.E. than men.”

M.E. research studies are ongoing and constantly exploring new findings and evidence. More M.E. research can be easily accessed online, especially through charities such as M.E. Association and M.E. Research UK. M.E. research offers a wealth of up to date information, and the more we learn about the condition the better we can understand and support those living with M.E.

2008 vs 2018: a troubled past and a hopeful future

The history of M.E. has involved a lot of controversy. It has been a difficult condition to diagnose due to its broad definitions, symptoms and causes and, for many years, healthcare professionals did not agree on a formal classification of the condition. Some doctors did not consider it to be an individual condition at all or considered it to be psychological. Broad definitions of M.E. also make it difficult to estimate how many people are actually living with the condition.

Due to the difficulty of diagnosis and unknown cause, there are M.E. patients who have experienced misunderstanding about their condition and have even been misdiagnosed.

However, one big step forward for M.E. patients was the clinical guidelines released by the National Institute for Health and Care Excellence (NICE) in 2007. These documents helped to give doctors across the country a national standard for the diagnosis and management of M.E. These guidelines were updated in 2017 and are due for another update in 2020 to include the most current information that will keep improving the diagnosis and management of M.E.

In 2018 the M.E. Association shared The Real ME Campaign which led to hundreds of people living with M.E. sharing photos of themselves, to highlight what the condition really looks like. They wanted to show that M.E. can happen to anyone and affect people in many ways. Due to the success of the campaign in 2018, the M.E. Association is continuing The Real ME Campaign during M.E. Awareness Week in 2019. Be sure to keep an eye out for it on social media!

Although the diagnosis and management of M.E. still has a long way to go, the improvements made through research and the increased awareness surrounding the condition provides a great set up for a hopeful future in which diagnosis, understanding and treatment can all continue to develop.

Looking for more information?

If you are looking to read more about M.E. or the medical research surrounding the condition, the M.E. Association has a range of resources and M.E. Research UK has a detailed list of all their research studies. These charities also offer support and information for anyone who has been affected by M.E.

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