NGO launches ME, Fibromyalgia and CFS awareness campaign

The Myalgic Encephalomyelitis (ME), CFS and Fibromyalgia Alliance launched an informative campaign to raise public awareness about the conditions through various leaflets to be distributed at various clinics and Mater Dei earlier today.

The group’s president Ruth Debono said that the group wanted to raise the public profile of this condition as little to nothing is known in the public sphere about the condition.

“We are also pushing for more professionals to focus on the condition and to research how to diagnose and treat the condition,” Debono said stressing that diagnosis was often a challenge in itself.

“Whereas before it was a question of years before a proper diagnosis was made, now it has become extremely fast, with people suffering from something else being told they have fibromyalgia,” she explained, adding that a balance was needed and that it could only be reached through appropriate research and training.

President Maire Louise Coleiro Preca pointed out that Fibromyalgia was a condition that was not very easily detected, and that it was very difficult to identify due to its various symptoms.

Debono said that the aim of the NGO, was not just to offer support to sufferers, but it wanted to work with the government to start clinics specialising in the care of patients. She added that although the condition had been placed on the chronic illnesses list, a lot still needed to be done in the recognition of the condition, with the group pushing for it to be recognized as a disability.

“The fact that the condition has been placed on the list, means that we now have two of our pills subsidized, however, this is not enough, since the disease also has many different aspects and symptoms.”

Debono added that the condition was such that it often led to many of the sufferers having to leave their jobs and therefor risk living in poverty, especially with pills and medication costing some €100 or over every month.

“80% of sufferers are female, while 20% are male, and an invalidity pension is not enough for those affected to cope,” she stressed adding that the NGO was in talks with ETC to increase opportunities of teleworking and working by correspondence for sufferers.

“Such a move could help us have an extra income and it would mean we get to live an easier life.”

Coleiro Preca said that authorities also needed to focus on what happens after the diagnosis as many people tend to lose their quality of life aside from their jobs.

She added that according to a 2010 EU study, some 14 million people had the condition in the EU, and that although awareness had increased in recent years, it was not enough. 

“I thank the association for working so hard to raise awareness and I hope that work places can become more fibromyalgia friendly,” Coleiro Preca said, adding that the president’s Palace would be lit up later today as a symbol of support on the World Fibromyalgia Awareness day.

“We need help not pity,” Debono said. “Our dream is to be able to live a normal life, and if there were a cure, we would all gladly run to it,” she said emphasising that the group did not aim to invent ways of sponging off benefits.

KNPD chairman Oliver Scicluna said that before meeting representatives of the association, he had no idea about the condition, but that the commission was now one of the few entities to recognize it as a disability and offer its services. Scicluna added that he hoped he could continue to serve the group in any way possible.