Two Maltese nurses living with the debilitating conditions, Myalgic Encephalomyelitis (ME), commonly, but wrongfully known as chronic fatigue syndrome (CFS), and Fibromyalgia spoke out during this month's awareness month to highlight the daily struggles faced by people with these invisible illnesses.

While one continues to work through the pain and exhaustion, the other has stepped back from her job to prioritise her health, but both are united in their mission to raise awareness and push for greater understanding and support.

ME is described as a chronic condition that causes inflammation in the brain and spinal cord, and keeps patients from doing their usual activities due to difficulties with physical and mental exertion.

ME often follows an infection and leaves 75% of those affected unable to work and 25% of those who are home-bound are bedridden. It is the only chronic condition in the world to display PEM (post-exertional malaise) as its main symptom. Even mild patients have a decline of 50% activity.

On the other hand, fibromyalgia is a chronic condition characterised by widespread pain and tenderness, often accompanied by fatigue, sleep disturbances and cognitive difficulties.

Both Maria Gauci and Louise Cachia are members of the ME, CFS & Fibromyalgia Alliance Malta, an NGO that advocates for better understanding, support and healthcare for those affected.

Through the alliance, they are amplifying the voices of hundreds in Malta who live with these misunderstood conditions, highlighting the urgent need for recognition, accessible care and compassion.

"It is not just tiredness," they stress, "it is a constant struggle against a body that does not recover," the two said.

Diagnosing ME, CFS and fibromyalgia is often a long and frustrating process, as there is no single definitive test to confirm these conditions.

Instead, diagnosis is typically made through exclusion - ruling out a range of other possible illnesses with similar symptoms, such as autoimmune disorders, thyroid issues or neurological conditions.

This process can take months or even years, leaving patients in limbo as they search for answers while continuing to suffer from chronic pain, extreme fatigue, cognitive difficulties and other life-altering symptoms.

'I am trapped in a body that forgot how to recharge,' Maria Gauci's journey with ME and fibromyalgia

Gauci first began feeling overwhelming fatigue around 10 years ago, following a difficult life episode.

Until then, she had always considered herself a high-energy person. "I would feel tired but quickly recover," she said. However, this fatigue did not go away, it grew worse, eventually leading to depression.

Gauci said she sought help and underwent several tests. "The blood tests came back normal, so the advice was to go out, go for walks and exercise," she said.

However, this was impossible, as she could barely lift her head from the pillow. "I followed the advice because I wanted to get better. I do not blame the doctors; as a nurse, I know that's what they're taught to say," Gauci said.

She tried short, slow walks but would collapse into bed right afterward. With two young children and a reduced-hours nursing job, life was becoming unmanageable.

"Unless I had help from my husband or my aunt, things were inexistent for me. It was like I was living in a black bubble," Gauci said, adding that she also struggled to process conversations and respond.

When her brain fog lifted, Gauci began researching. "Knowledge is empowerment. My coping skill was to search and try to find out what was happening," she said.

Eventually, she came across ME and fibromyalgia as possible diagnoses and discussed them with her doctors. "As a nurse, I was never taught about ME or fibromyalgia. They simply weren't in my vocabulary," she said.

Two years later, after ruling out other conditions, she was diagnosed with fibromyalgia. Her ME diagnosis took much longer, however.

"With ME, there are various stages, mild, moderate, severe. I was on the mild to moderate side, so doctors had to dig deeper," Gauci said.

Even while working, she took extended sick leave to recover. "I used to hide my symptoms, but patients would still ask if I was okay. I took that as a sign," Gauci said.

She worked in a busy department with constant stimulation, which was overwhelming. "I would work six hours, then go home and crash. I was running on empty. My body wasn't recharging," Gauci said.

Gauci described herself as once being like a "jacuzzi - bubbly and full of energy, but that all had changed.

"My son was four. He used to ask when I would get out of bed to play or read to him. I felt guilty not being the mother, wife or worker I wanted to be," Gauci said.

When she took sick leave, it would last three weeks: the first completely in bed, the second starting to move around, the third doing light tasks. However, returning to work would bring the fatigue back immediately.

A hallmark of ME is post-exertional malaise, which Gauci said can happen 12 to 72 hours after activity and can last hours to months, depending on severity.

The body cannot recover after physical, mental or emotional effort, Gauci explained. "If you keep pushing through, it leads to a crash," she said.

A crash, she said, is when the body shuts down physically and mentally. "It is like hibernation. I experienced a crash after the holidays, even though we did nothing extraordinary," Gauci said.

She had early warning signs: neck pain, light and sound sensitivity and shivering, among other symptoms.

"The body has just enough energy to breathe. I had to give in and just rest," Gauci said.

Despite switching departments and reducing hours, working became "unbearable". She said it felt like dragging a heavy object up a hill with chains tied to her limbs.

"I was crashing all the time. It was a hard decision to stop working, as I love my job and my colleagues," Gauci said.

These days, Gauci is mostly confined to her home. She manages some household chores and occasionally goes out for coffee with her husband on weekends, but that's the extent of her activities.

"I go out only for appointments or necessities," Gauci said, adding that she has four to five hours of usable energy daily and must rest between tasks.

"There were times I couldn't even cook pasta with ready-made sauce. My husband fills in the blanks," she said. "It's like walking a tightrope. I'm trapped in a body that forgot how to recharge," Gauci said.

Gauci said that ME and fibromyalgia are often misdiagnosed or dismissed at the beginning, and at first, it is often blamed on anxiety or depression.

"People tell you to 'snap out of it'. Would you say that to someone with the flu? With ME, delayed diagnosis means delayed care," Gauci said.

She warned that even mild ME can worsen if patients are told to push their limits. While ME, fibromyalgia and chronic fatigue are often used interchangeably, they are distinct.

"Fibromyalgia mostly causes full-body aching and overstimulation, even from bad weather. With ME, the issue is at the cellular level, the body cannot recover properly. In fibromyalgia, pain is amplified in the brain," Gauci said.

Feeling isolated early on, Gauci eventually discovered the NGO. She said that she had heard of a meeting about fibromyalgia and ME, and she dragged herself to the meeting, even though she was fatigued.

"From that day on, I wasn't alone. I felt understood, and that I could understand others," Gauci said. She then became active in the NGO, even serving on its board to push for more patient support.

"I had to resign twice due to my health, but I still support members however I can," Gauci said.

Getting a formal diagnosis was validating for her, as it helped her refine treatments and advocate for herself.

There is no cure for ME or fibromyalgia, and treatment is about managing symptoms, she said.

 "You try to address what is making you feel the worst," she said. "There are pain treatments that work beyond regular painkillers, by blocking pain signals to the brain," Gauci said.

Sleep, too, can be a major issue, and doctors must find the right medication to help patients rest.

Gauci warned that other health issues should not be ignored, and new symptoms must be checked, as other issues can crop up.

She said that the current health system does not offer long-term follow-up.

"We're often discharged after a few visits. They might offer physiotherapy, but these are chronic illnesses, we need ongoing regular monitoring to avoid complications," Gauci said.

'You grieve the life you lost,' Louise Cachia opens up about living with ME and fibromyalgia

Around seven years ago, Cachia began experiencing overwhelming fatigue. She was working alongside two doctors, to whom she explained her symptoms, and it was they who first suspected it could be ME, then commonly referred to as chronic fatigue syndrome.

Following several tests, she was diagnosed with both ME and fibromyalgia.

"I knew how to manage the pain, but this type of fatigue was too much," Cachia said.

"Chronic fatigue syndrome is something that stays in your life forever. There is no treatment, and it turned my world upside down," Cachia said.

Once a strong, active person whose passion was diving, Cachia has since had to give up her hobbies.

"To dive, you need a lot of strength. I don't dive anymore, and every year my condition gets worse," she said.

Even her job has become more difficult, although she still works as a nurse. She said she frequently takes unpaid sick leave, and she is worried about the long-term impact.

"Some people end up unable to work, and that can push them to the poverty line. There are days I have to carefully manage how I split my expenses," Cachia said.

The condition has affected her physically, mentally and socially, she said.

With lowered immunity, she is more susceptible to other illnesses, especially as a nurse. Some days, Cachia said she cannot even cross the road to the supermarket, ordering groceries online instead.

"You often pity yourself when you see what you have become," she said. "While I bounce back, there is grief for the life I've lost. ME is literally keeping me out of life," Cachia said.

Her healthcare background has helped her better understand her own illness and become more compassionate toward patients.

Cachia described ME as a hidden disability that is difficult for healthy people to comprehend.

"It is so complex that even people around me did not understand at first. When they started seeing I was not myself or as productive, then they started to get it," Cachia said.

She underwent a medical board review and was granted a concession to begin her shifts at 10am.

"I was happy they lent a hand so I can continue the job I love. But it was a long journey for them to understand," Cachia said.

Her determination and "hard-headedness" are what have kept her going. Cachia also enrolled in an online Master's programme, driven by the need to keep giving back.

Advocacy, she said, has always been important to her, and that was how she joined the NGO to raise awareness about ME, particularly.

"Fibromyalgia is talked about to some extent, but ME remains hidden," she said.

"People with ME are often labelled lazy, but the condition is debilitating. If there were a cure, I would be the first to know about it. But there isn't, it's about living day by day," Cachia said.

She said that treatment varies depending on severity, and patients often try different vitamins or supplements in search of a bit more energy.

"It is not one-size-fits-all. Medication is expensive and many cannot afford it," Cachia said.

Though her condition is moderate, she said she fears it may worsen. "There may come a time where I will have to reduce my hours or even leave my job. That is something I am afraid of. Being a nurse is what identifies me," Cachia said.

When her body crashes, she listens to it, she said. "I sleep a lot, but I only recharge enough to get the basics done. Everything is planned, even how much I need to sleep just to keep working," Cachia added.

She said she now must rest after every task, describing it as a vicious cycle. "Even daily things take me a week to complete," Cachia said.

She has given up most hobbies, though she still swims in summer, when possible, as it helps. From her side, cancelled plans and last-minute no-shows have become the norm, which she said leads to more isolation.

Thankfully, Cachia said she has a strong support system, as her parents understand her and never pressure her.

"However, not everyone has that. Some people are completely alone," Cachia said.