The Malta Independent 30 September 2023, Saturday
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‘We want to start living, not surviving’ – ME sufferers striving to make their condition known

Bettina Borg Sunday, 16 May 2021, 09:30 Last update: about 3 years ago

Myalgic encephalomyelitis (ME) sufferers are not getting the recognition and the help that they deserve, both on a medical and institutional level, two sufferers of the chronic disease told The Malta Independent on Sunday.

ME is a multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism system, affecting 0.2-0.4% of the population.

It is characterised by debilitating exhaustion and it is the only condition in the world that leads to suffering from post-exertion malaise (PEM). It is generally far more draining than FM, with an average of 75% of sufferers rendered house-bound, unable to work. The condition has a 3% death rate.

With May serving as national awareness month for FM and ME, this newsroom spoke to two women who suffer from ME about how the condition has complicated ordinary activities, the lack of awareness of the condition in public consciousness, and the significance of recognising ME as a disability, not just an illness.

Rebecca Camilleri, 37 (photo above), is the Public Relations Officer and Events Manager of the ME, CFS and Fibromyalgia Alliance, the NGO that is working to get ME and FM recognised as official disabilities by the Government. Maxine Zammit, 60, is a previous board member of the NGO.


Misdiagnosing someone with ME ‘could push them to an early grave’

It is essential that doctors are knowledgeable about both ME and FM before diagnosing an individual, Camilleri told this newsroom.

The main difference between the two conditions is that ME is a regressive condition, whereas FM is not.

“With FM, you need to push yourself a little bit,” Camilleri said. “You can exercise lightly and that will help you in the long run. With ME, pushing yourself will only increase the severity of the medical condition. Once that happens, you could end up in a wheelchair. You could die if you push yourself too far.”

“If a doctor is diagnosing you with FM when you’ve actually got ME and he’s pushing you to exert yourself, he could be pushing you to an early grave,” she continued.

Before she was diagnosed, Camilleri would strive to work and be productive despite her condition. As a result, she faced serious risks to her health and woke up paralyzed one morning. It took her a day to recover movement in her legs.

After the incident, Camilleri spent a lengthy seven years within the confines of her home, resting and regaining her strength.

Zammit also faced a collapse of her own, which lasted four years of being bed-bound.

Unaware of ME, Zammit believed that her weak condition originated from stress. Working in London at the time, she routinely took the underground to get to work, which decreased her immune system significantly.

Eventually, she collapsed and had to be cared for by her husband.

“He took on the role of mum, dad and carer,” she said.


‘I lived in poverty. I couldn’t afford tampons at a point’

Due to their debilitating conditions, both Camilleri and Zammit (above) have had to give up their careers to stay at home and rest.

Unable to make a living, Camilleri couldn’t afford basic needs.

“I lived in poverty,” she said. “I couldn’t afford tampons at a point, nor could I afford to buy medication and vitamins which worsened my medical condition.”

Camilleri now lives with her mother, who was diagnosed with pancreatic cancer. They both take care of each other.

“It’s horrible, but once my mum said: ‘If I didn’t have cancer, we wouldn’t have money at our disposal.’ That’s as bad as things get,” Camilleri said.

Zammit, on the other hand, lives with her family and had to give up a job as a solicitor because of her condition. As a person who functioned independently, having to start relying on others proved to be a challenge.

“The hardest thing was learning to ask for help,” she said. “More than anything, it was difficult to accept the change from being ultra-active to not being able to go to the toilet alone at times.”


‘Writing an email might take me seven hours at a time’

Simple, menial tasks can exhaust the two women, forcing them to regain their strength for hours or days afterwards.

The simple act of wearing clothes could impinge on the livelihoods of ME sufferers.

“Clothes can hurt us and burn our skin,” says Camilleri. “There were times when I would work and I would need to call in and say that I couldn’t come in because I couldn’t wear clothes. I have nightgowns that are really soft on my skin which I need to wear on some days.”

Walking could also pose a challenge to ME sufferers.

“Sometimes I would wobble and fall off the pavement because I was so tired I couldn’t hold myself up,” says Zammit.

Camilleri noted that even writing a short email provides its own difficulties.

“To write an email might take me seven hours at a time because I lose concentration,” she said. “The light from my tablet will exhaust me and I'll have to go sleep. On a good day, I could write that in five to ten minutes. The simple things become overly complicated.”


‘We live our lives in quarantines and lockdowns’

While Covid-19 has left devastating effects on countless people, Camilleri said that the pandemic is giving healthy individuals perspective into the lives of house-bound ME sufferers.

“Many people can now understand what it is like living in fear every day; living in poverty because many have lost their job, are not going abroad, are not going out, and are stuck at home,” she said. “We live our lives in quarantines and lockdowns.”

She highlighted that those who suffer from Long Covid have similar symptoms to those who suffer from ME – most noticeably long-standing fatigue from performing simple tasks.

She hopes that the upsurge of research into Long Covid will lead the way for more studies into ME, which is often overlooked in medical research. Even simply finding a test to diagnose one with ME – which does not exist yet – would “mean the word,” she notes.


Recognising ME as a disability, not just an illness

To date, the Doctors of Medicine degree at University dedicates one hour focusing on ME and FM out of a total of five years. This, both Zammit and Camilleri said, needs to change.

“There’s no point in anything unless we have doctors and professionals within a medical board that actually understand what ME is,” Zammit said.

With this lack of knowledge, combined with the fact that the condition is invisible, ME is overlooked and not given the attention it deserves.

Recognising ME and FM on an institutional level as disabilities, rather than illnesses, would take a load off all the sufferers who are not receiving the benefits they deserve.

“When you’re recognized as having a disability, you get more help in the medical community and you’re treated as an actual sick person,” Camilleri notes. “We are often regarded as making up things, because we still have doctors who tell us it is all in our heads. This needs to change.”

Alongside validity, ME and FM sufferers would get financial benefits if their condition is recognised as a disability.

“We need vitamins and I can’t buy them because I’m a pensioner and don’t have the funds,” Zammit says.

While the government offers sick allowance, many ME sufferers who have applied for the allowance have been rejected, leaving them unable to care of themselves.

“We are talking about 100 euros a month,” said Camilleri. “These are small steps which I’m thankful for, but these people do not understand the severity we are living in.”

“We want to start living, not surviving, we want to prove ourselves to society, we want proper diagnosis and treatment,” she concluded.

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