Sufferers of the debilitating illness ME are glad the government is finally recognising it as a chronic condition but insist action must urgently be taken to ensure it is diagnosed and treated.
“The recognition is good but, now what? Recognition is only the tip of the iceberg and recognition without appropriate and timely follow-up action is even worse,” activist Kevin Drake, who is an ME sufferer, said.
For sufferers to start benefiting the government had to set up a specialised unit for neuroimmune diseases in hospital, train medical practitioners to diagnose the illness and start “a proper regiment of treatment”, the former actor said.
“Most importantly medical professionals need to be informed… because the biggest problem is the misinformation that still exists among the professionals themselves.”
On Tuesday the Health Minister announced in Parliament that myalgic encephalomyelitis (ME) and fibromyalgia were going to be officially recognised as chronic diseases.
ME often referred to also as Chronic Fatigue Syndrome (CFS), is a progressive, degenerative and debilitating disease. It is primarily neurological but symptoms also include cardiovascular, immunological, endocrinological, gastrointestinal and musculoskeletal dysfunctions and damage.
People with fibromyalgia experience pain in their tendons and ligaments, along with tender points throughout their body.
Fibromyalgia has some similarities with ME, however, the two conditions are distinct.
These misunderstood conditions have courted their share of controversy because, for many years, there was a debate as to whether they were actually an illness.
Now, the Maltese government is finally recognising them as existing conditions. But what does this effectively mean?
Questions sent to the Health Ministry remained unanswered by the time of writing.
Meanwhile, representatives of support groups for ME and fibromyalgia welcomed the recognition and agreed that this was “a start”.
Rebecca Camilleri from the ME, CFS (chronic fatigue syndrome) and Fibromyalgia Alliance Malta said: “We are extremely happy that we are finally listed under the chronic illnesses, as now we can start getting help to try make our life that less harder… This is a start to a hopefully better future.”
A spokesperson for the ME Sufferers Malta group stressed the importance of differentiating between the two conditions.
“ME sufferers are pleased that the condition is finally being officially recognised.
“We would now like to know what steps will be taken to ensure doctors are trained to diagnose and treat the condition,” she said, adding that ME did not discriminate between adults and children.
“The only way forward is to bring an international expert to Malta to guide the medical practitioners,” she added.