For many years, I have lived with moderate/severe myalgic encephalomyelitis (ME). I was housebound and dependent on others for some basic activities of daily life. The disease itself has taken away many aspects of the life I once had. But the suffering caused by ME does not come only from the disease.

People with ME often experience three different forms of harm.

The first harm is the disease itself: the biological damage caused by a serious, disabling illness. This is the harm that research is trying to address. We urgently need better diagnosis, effective treatments and, ultimately, a cure.

But the second harm comes from disbelief and invalidation. Instead of receiving understanding and support, many of us encounter questioning, doubt and dismissal. This is not only something that happened in the past. It continues today. My symptoms are still questioned, my limitations are still doubted, and I still have to justify that I am genuinely ill.

The impact of this is profound. After years of being disbelieved, many patients lose confidence in their own voice and in their ability to defend themselves. Seeking medical care can become a source of fear rather than safety. Facing judgement, even when it is silent, creates a psychological burden that adds to an already disabling disease.

And this leads to the third harm: the physical damage caused by the system’s response to the illness.

When ME is not recognised as a serious biological disease, patients are often forced to exceed their limits. We have to spend our very limited energy proving our condition, attending procedures that are not adapted to our disability, fulfilling administrative and legal requirements, defending our access to social support, or repeatedly explaining our limitations.

For a person with ME, this effort is not harmless. It can worsen the disease itself.

This is the crucial point: patients with ME cannot wait for a cure before the harm stops.

Research is essential, and we need investment in it. But recognition, education, appropriate accommodations and respectful treatment are measures that can be implemented now. They can prevent additional suffering while science continues to advance.

In countries with fewer resources, the problem may be limited access to care. But even in countries with well-developed healthcare and social systems, many people with ME continue to experience harm because outdated beliefs, lack of training and poor implementation of current knowledge persist. Resources alone are not enough if the system does not recognise the disease and protect the patient.

No person with a serious disability should have to fight the very systems that are supposed to provide care and protection.

This is not only a healthcare issue; it is a human rights issue. Under the UN Convention on the Rights of Persons with Disabilities, people with disabilities have the right to access healthcare, support and reasonable accommodations with dignity and without discrimination. Yet, many people with severe ME are too ill to make their voices heard and depend on others to speak on their behalf. Their rights deserve the same protection as those of any other person with a disability. People with ME must not be left behind because their disease is still misunderstood.

We need national and global leadership to ensure that knowledge about ME reaches healthcare professionals, that evidence-based care is implemented, and that people with ME are treated with dignity and respect. We need systems that prevent harm, not systems that unintentionally create more disability.

People with ME have already lost enough to this disease. The healthcare and social systems should not take away even more.

 

For more information on myalgic encephalomyelitis, please visit the European ME Alliance (EMEA) website.