Rebecca Sultana, the founder of an ME support group, welcomed the setting up of a new initiative that aims to hold monthly meetings and bring together sufferers of the debilitating illness.
There is strength in numbers…
Ms Sultana, who has ME herself, is too weak to be active in the ME Sufferers Malta group she set up in 2004. The group is, however, kept going through a Facebook page managed by others.
When asked about having a splinter group, Ms Sultana said any effort to raise awareness about ME was “positive news”.
The first meeting of the newly launched group, which so far remains unnamed, was held at the Birkirkara local council offices on Tuesday.
It was attended by about 60 sufferers of ME – myalgic encephalomyelitis – and fibromyalgia, including actor Kevin Drake, who said the “silent sickness” was misunderstood and dismissed by society.
ME is characterised by a range of neurological symptoms, muscle pain and intense physical or mental exhaustion. Its cause is still unknown and there is no known cure.
People with fibromyalgia experience pain in their tendons and ligaments, along with tender points throughout their body along with fatigue.
These misunderstood conditions have courted their share of controversy because, for many years, there was a debate as to whether they are actually an illness.
Ms Sultana had set up the group to put pressure on the government to recognise ME as a disability and offer support to sufferers. However, to date, the illness remains unrecognised.
Earlier this week, Health Minister Godfrey Farrugia said he would “seek the way forward” to help sufferers of the conditions. When contacted yesterday, Ms Sultana said it was great to see a new group pushing for recognition. Her only concern about the new group was that it placed the two conditions, ME and fibromyalgia, under one umbrella.
“This worries me because they are distinct and have to be kept separate since they require different therapies,” she said.
Rebecca Camilleri, an ME sufferer and one of those behind the latest initiative, explained that ME Sufferers Malta was an e-mail based group that allowed people to share experiences and interact from their homes.
The new group wanted to create something that brought people together and out of their homes.
Asked why she decided to set up a group for both fibromyalgia and ME, she said that one of the main reasons was that the two conditions were often misdiagnosed, which meant a person thinking they suffered from fibromyalgia could, in fact, have ME.
She stressed that the group was aware of the difference and that there was no single cure for all ME patients, let alone for both illnesses.
“Another reason is that we must be heard. If a group needs 10 people to be heard, we require 20. There is strength in numbers,” she said.