Two summers ago, on a dry Saturday morning in London, Si and I set out for a walk. We headed to our local park, Streatham Common. As we took a turn into the Rookery, we noticed a young man sitting on the third step of the wide, well-trodden staircase descending towards the South-East. He held his bent head in both his hands.

An invitation.

I took a deep breath, softly stepped up to him with a ‘Hi. Good morning.’ He slowly raised his head and mirrored back my faint smile. None of our smiles reached our eyes. They were not real yet, only polite.

We got talking and forgot about the walking. Miles was in his late thirties, a father of two. He had been unable to work for a few months because of disabling symptoms that suggested something like Chronic Fatigue/ ME/ Long Covid. Of late his stress levels had rocketed as his employer had started suggesting ‘malingering’ in his letters. Even though his GP understood and validated his medical condition, his employer showed no understanding.

We gathered for coffee in the park on two more occasions that year. We enjoyed our chats, kept in touch and met up regularly even though not frequently. This year, he tells us he has been dismissed from his job after a “fair process” for “gross misconduct” for being physically and mentally unable to work. Gross misconduct includes physical violence, theft and fraud, intoxicated while at work and similar serious offences.

A study at King’s College London looked at the causes of death in 2000 patients with CFS/ME conducted over the years, 2007-2013. A total of 17 patients died in that period – eight died from cancer, five from suicide, and four from other causes. When compared to the general population, less than one suicide would be expected in a study population of this size. Yet five deaths by suicide were recorded. This means that, after controlling for age and other factors, the rate of deaths by suicide in this study was approximately six times higher in people with CFS than in the general population.

The reasons for this vulnerability are – poor quality of life with no hope for relief, loss of employment, finances, and/or relationships, chronic pain, secondary depression, and other associated mental and/or physical illnesses.

Miles felt he was losing his sense of self as a capable human being with integrity. People didn’t always believe or understand him. Maybe he is what they called him, a malingerer. This is hard on his family, but they support him all they can. The kids are delightful. He still has good days and bad, still has serious brain fog he cannot work through sometimes, still can’t do much but he tries his best. He carries a lot of shame for this thing that happened to him. He feels trapped.

No tests can prove his diagnosis. No definitive treatment is available yet.

Resource: Action for ME: https://www.actionforme.org.uk/