‘I feel I’m living in a cage that is closing in on me’ | The Sunday Times of Malta | 29 April 2012

From The Sunday Times of Malta, 29 April 2012 (story by Ariadne Massa)

The warm spring temperatures have failed to penetrate the dark living room where Rebecca Sultana is huddled in a sweater and woolly slippers.

Ms Sultana, who turns 35 tomorrow, is so frail and weakened by ME – myalgic encephalomyelitis – that she constantly feels cold, noise exhausts her and she is sensitive to light.

Persistent pain gnaws at her disappearing quality of life, but she has made a mammoth sacrifice to let The Sunday Times into her home to push an important message to the authorities – ME has to be officially recognised as a disability.

“The future is frightening. Terrifying. It’s an uphill task to retain a modicum of dignity”

“We want ME to be put on the government’s list of disabilities – it’s the only way we can get any support,” Ms Sultana, the founder of ME Sufferers Malta, said.

ME is a debilitating illness 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, according to neurologist Anthony Galea Debono who diagnosed Ms Sultana with ME after she had spent four years struggling with what she described as a “perplexing, painful illness with no name”.

“There is no exact definition of ME, which makes it a bit difficult to diagnose. It’s a combination of symptoms, one with good and bad weeks,” he said, explaining why it often took long to secure adiagnosis.

“Medically speaking there are no tests whatsoever that can confirm you have ME. All available blood tests and radiological investigations are unhelpful – it has to be a clinical diagnosis,” Dr Galea Debono said, adding it remained unclear how many suffered from this condition in Malta.

This misunderstood condition has courted its share of controversy because for many years there was a debate as to whether ME was actually an illness at all.

Although questions remain, ME has been recognised as aneurological illness by the World Health Organisation, which gives some reprieve to sufferers who have to put up with disparaging comments and guilt that “it’s all in our heads” or to “snap out of it”.

ME is often described as chronic fatigue syndrome (CFS), an umbrella term. But, according to the ME Research UK, in recent years there has been a growing recognition that CFS was too broad. At present, efforts are being made internationally to remedy this diagnostic confusion and meanwhile the term ME/CFS is frequently used.

This situation coupled with a lack of awareness in Malta has made patients’ battle to get their condition recognised doubly hard and the sad thing is they are often too worn out and chronically ill to push their cause.

“The government has completely ignored individual patients’ and ME Sufferers Malta’s pleas for assistance in the form of benefits and services (home help etc…) but most importantly for specialist medical care, which should be ours by right,” she said, becoming breathless each time she attempted to stress a point.

ME patients, she said, were “dealt a blow” to learn ME had not been included in the recently amended list of medical conditions that made them eligible for free medicines.

Although there was no cure, patients receiving an early diagnosis and offered a supportive management regime with case-specific examinations were less likely to deteriorate, she said.

There were private clinics abroad that provided these services, but unless patients were sent by the government or subsidised, attending such a clinic “will only remain a pipedream for an already miserably hard-up patient”.

When asked if the government would recognise ME as a disability, a Family Ministry spokesman insisted that complaints by ME sufferers and their families were not being ignored.

On the contrary, this ministry was in the process of evaluating the recommendations of a working group set up to specifically analyse, revise and submit fundamental changesto benefits paid to people with disabilities.

“ME sufferers have made their complaints at the right time… discussions on reform of disability are just starting”

“ME sufferers have made their complaints at just the right time when discussions on the reform of the disability were just starting,” the spokesman said.

On the subject of free medicines, a Health Ministry spokesman pointed out that there was, as yet, no known pharmacological treatment or cure specifically indicated for ME.

There was some evidence showing that cognitive behaviour therapy and graded exercise therapy could benefit certain sufferers. Given such evidence, the ministry was assessing the possibility of offering training to local professionals to deliver such programmes.

The ministry was aware that patients were requesting specific services, particularly the setting up of a specialised one-stop shop type of clinic, and it was “exploring” these possibilities.

“Given ME’s chronic nature, the ministry believes it is through developing sustainable local services that sufferers will be able to receive appropriate specialised care and support,” the spokesman said, adding it was not the ministry’s policy to fund treatment that was only available abroad.

In the meantime, ME sufferers like Ms Sultana, and actor Kevin Drake, try to summon theirfailing energy to reverse theignorance surrounding this illness and petition authorities to help them out.

Mr Drake said: “The future is frightening. Terrifying… It’s an uphill task of attempting to retain a modicum of dignity in a life already rent asunder by the hurricane-like havoc the condition wreaks.”

Both patients have lost their appetite and consequently are inching towards being dangerously thin. They suffer from depleted mobility, persistent pain, low self-esteem, low bone density… and severely diminished finances as they seek to control the symptoms.

Ms Sultana, a former teacher who lives with her husband Reuben, wondered out loud how he was still with somebody who was like a robot.

“If I were him I’d have run a mile years ago,” she said, adding that even a hug could sometimes be too painful to bear.

“I feel as if I’m living in a cage that is closing in on me… ME may not be fatal, but it is an excruciatingly painful, exhausting and soul-destroying life sentence.”

All about ME

• The primary symptoms of ME/CFS are: post-exertional malaise, mild fever, sore throat, swollen lymph nodes, muscle weakness, muscle/joint pain, headache, memory and concentration problems, sleep dysfunction and fatigue.

• The symptoms vary greatly from person to person, with some having to be tube-fed and bed-bound, while others are just about able to hold down apart-time job.

• Evidence shows ME patients die 25 years younger than normal.

• ME/CFS has a huge impact on the lives of families and carers, but little, if any, support is available to them.