Former President Marie-Louise Coleiro Preca has urged Malta to start recognising fibromyalgia and Myalgic Encephalomyelitis (ME) as disabilities.
“Fibromyalgia and Myalgic Encephalomyelitis (ME) should be recognised as the disabilities that they are,” Coleiro Preca wrote yesterday to mark Fibromyalgia & Myalgic Encephalomyelitis (ME) Awareness Day.
The former president has become the most high-profile voice to endorse the call made by members of the ME, CFS and Fibromyalgia Alliance which was recently the subject of a social media awareness-raising campaign.
The Commission for the Rights of People with Disabilities has also backed this call, describing fibromyalgia and ME as “invisible disabilities” and publishing quotes by activists from the Alliance.
Former PN leader Adrian Delia also said the time has come to understand the realities faced by people suffering from these conditions, which he warned cause heavy suffering.
The Alliance estimates that around 4-6% of Malta’s population suffers from one of these two conditions, an estimated 75-85% of whom are women.
In 2019, the Maltese government announced sickness benefits for fibromyalgia and ME sufferers, which was hailed by many in the community as a first step towards formal recognition.
However, the Alliance warned that in practice, the benefits system only entitles them to around €100 a month, which is nowhere near enough to cover their medication, supplements, treatment, and doctors’ appointments.
Meanwhile, means-testing limits the aid to households with only one breadwinner (ie. the fibromyalgia/ME sufferer) whose bank savings are under a capped amount.
“We ask the Maltese Government to help us out, to help us live somewhat of a respectful good life and give us the same equal opportunities that other disabilities have,” the Alliance said in a recent statement. “We do not want more; we only want a fighting chance like others get.”
In an interview with Lovin Malta, the Alliance’s president Ruth Debono said the COVID-19 pandemic has given people a glimpse into the daily realities faed by people who suffer from chronic pain.
“Those who had more severe symptoms of COVID felt a bit of what we go through on a daily basis,” she said. “Imagine living with COVID every day of your life. I mean every minute, every second – day and night. Sometimes it gets so bad that you feel like you’re going to die. Your breath literally goes away and the pain is so high you want to shut down.”