Hope for ME patients as immune system study challenges stigma that chronic fatigue is 'all in the mind'

A test to identify people at risk of debilitating chronic fatigue syndrome, also known as myalgic encephalopathy (ME), and minimise its impact has seen a breakthrough, scientists have said.

Researchers from King’s College London have shown for the first time that patients who go on to develop a CFS-like symptoms have a measurably overactive immune system and are primed to over-respond to infection.

The roots of ME/CFS are poorly understood. Many sufferers can trace their condition back to an initial viral infection, but by the time the condition has been established, blood tests come back normal.

This leads to a frustrating process of elimination in diagnosis with many sufferers struggling to be believed or understood by health professionals unable to find a cause.

Around 250,000 people in the UK are thought to be living with ME/CFS. Jessica Taylor-Bearman is a campaigner and writer who was 15 when she became acutely unwell with ME in 2016, following an infection.

“I was so ill, I was being fed through tubes and I couldn’t talk or move – it’s like locked in syndrome,” she told The Independent. “But they basically gave up trying to treat me and decided to call it a mental illness.”

“That’s why it’s so important that we’re starting to get research that shows it’s not just, as they tried to say, ‘all in your head,’ it’s a neuroimmune disease.

“But we need to get that message to doctors and medical staff, because research alone wont address this stigma that it’s ‘in your mind’ or a ‘yuppie flu’”.

To understand the biological differences between people who go on to develop ME/CFS, the King’s team used a hepatitis C treatment, interferon-alpha, which causes lasting fatigue in a significant minority of recipients.

The study, published in the journal Psychoneuroendocrinology, measured fatigue levels, health histories, and immune system markers, from participants before, during and after treatment.

Out of 55 participants in the study, 18 went on to develop lasting fatigue symptoms and they all had heightened immune system activity before the treatment and the exaggerated immune system response.

However by the time fatigue had hit chronic levels, there was no longer any detectable difference between the groups’ immune systems.

“The model that we propose is that these people have an ongoing primed immune system,” professor Carmine Pariante, senior researcher at the King’s Institute of Psychiatry, Psychology & Neuroscience, told The Independent.

“That could be either because of a genetic predisposition or because they’ve been exposed to infections early on in their life.”

“So their immune system becomes more hyperactive, and when the trigger comes – in this case interferon-alpha but it may be an acute infection – that causes an even higher response which puts them on a trajectory for chronic fatigue syndrome.”

“Although screening tests are a long way off, our results are the first step in identifying those at risk and catching the illness in its crucial early stages.”