CFS and FM patients: their rights and needs

In a society such as ours which is always on the go, it is normal for many to feel aches and pains, especially as we grow older. Often, we don’t give this fact a lot of thought and consider it as part of our daily routine, even though for some this may make their life very difficult. Such pain is often hidden, only the person suffering is aware of the daily struggles that they must go through to fight through the pain.

For those individuals with Chronic Fatigue Syndrome and Fibromyalgia, the situation is much worse as these illnesses are recognised by doctors and specialists for the pain and struggles, they bring with them. These illnesses are hidden and often very hard to diagnose.

Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness, but it can also include sleep problems, muscle pain and headaches among others. Fibromyalgia is a chronic, debilitating condition where patients experience widespread pain, fatigue, mood changes, sleep and memory problems. Those suffering from Fibromyalgia also experience a high sensitivity to pain and may also suffer from migraines and IBS.

These are just some of the symptoms that these individuals experience every day and it should be our priority to ensure that these patients get the best care and treatment possible. Unfortunately, the resources that such patients have at their disposal is very limited and this only serves to make their life harder due to the chronic pain and fatigue. One would think that at the very least, in all EU Member States that such conditions are recognised as a disability.

Unfortunately, since healthcare is left under the remit of each individual country, this is not the case and we currently face a situation where in some cases, these illnesses are considered as a disability which allows the patients to get treatment and financial help while in other states, these illnesses are not recognised and thus no help is available. In Malta, it was only in 2020 that fibromyalgia patients became eligible for sickness benefits, thanks to the Maltese Government.

This is a situation that affects almost 20% of EU citizens but there is no level playfield for these individuals. It is the EU Commission’s duty to ensure that these illnesses are recognised at an EU level. Only by having recognition at the highest levels can more work be done through research and also find ways to improve access to diagnosis and treatment.

CFS and Fibromyalgia are illnesses which can become disabling, and the conditions cause around 40% of sufferers to reduce their work hours or stop work altogether. Here we have a situation where apart from the suffering itself, these patients are also facing issues when it comes to their employment, which may also lead to financial troubles if they must give up their work. We must increase employers’ awareness that these conditions play an active part in their employees’ work routine. Only by increasing such awareness can we work together and find ways to increase comfort and find initiatives which can help these patients retain their employment.

To help patients suffering with CFS and Fibromyalgia, the work must be two-fold; we must ensure that these illnesses are recognised as disability at a European level and at the same time, increase the awareness and provide resources to employers’ which in turn can help these individuals in the workplace. If we use a holistic approach, we can ensure that resources are provided, and obstacles removed so these patients live a full and happy life as they deserve.