Emerge Australia is a national organisation providing information, support and advocacy for people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Their work raises awareness of CFS and provides support to more than 250,000 Australians living with ME/CFS.
The impacts of ME/CFS can be devastating, leaving 25% of patients housebound or bedbound, with many people unable to work or participate in community life. People living with ME/CFS often feel invisible due to the unknown cause of the condition, lack of effective treatment options and limited community awareness, leading many to ‘go missing’ from their own lives.
What is ME/CFS?
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems, among others. ME is classified as a neurological disorder by the World Health Organization.
ME/CFS Awareness Week
In May each year, people living with ME/CFS, their families, carers and allies organise and attend events around Australia and the world to raise awareness of the #MillionsMissing due to ME/CFS. The theme for this years campaign is “Learn from ME, because people living with ME/CFS matter.”
The focus for this year, will be about getting back to basics, sharing important information about ME/CFS through a range of webinars hosted across the week. All webinars will aim to run for a maximum length of 30 minutes. You can read through the description of the webinars and find more details online at Emerge Australia.
Who can develop ME/CFS?
ME/CFS affects men, women and children of all ages, ethnicities, and socioeconomic backgrounds. 75-80% of people with the condition are female. Around 25% of people with ME/CFS experience severe symptoms, leaving them housebound or bedbound.
While estimates of how many people have ME/CFS vary, it is thought that around 0.4-1% of the population is affected. This means that up to 250,000 Australians have the condition.
What are the symptoms of ME/CFS?
People with ME/CFS experience a wide range of symptoms.
A common misconception is that people with ME/CFS have ‘chronic fatigue’, and are just tired. Chronic fatigue is a symptom of many conditions (for example, heart disease, cancer, multiple sclerosis, anaemia and ME/CFS), but it is not a condition in its own right. Persistent and profound fatigue is just one symptom of ME/CFS, as it is with a number of other conditions.
The main feature of ME/CFS is post-exertional malaise (PEM), which means that symptoms get worse after physical or mental activity. PEM is very disabling and causes fluctuations in a person’s health: what they may be able to do one day, they might not be able to do the next. The level of activity that triggers PEM varies. For some, it may be a short walk or writing a homework assignment. For people who are more severely unwell, it could be brushing their teeth or reading a sentence of a book. PEM is often delayed and can last days, weeks or months, making the illness difficult to manage.
Other common symptoms include:
- sleep dysfunction
- widespread pain in muscles or joints
- cognitive difficulties, such as confusion, or problems with concentration or memory
- sensitivity to noise or light
- light-headedness or dizziness
- difficulty with being upright
- gastrointestinal problems such as nausea, abdominal pain, bloating and irritable bowel syndrome
- flu-like symptoms
- problems with temperature regulation
- sensitivities to food, medications or chemicals
What causes ME/CFS?
The cause of ME/CFS is currently not known, although a number of factors may be involved, including:
- infection (which is the most common trigger, but is not universal)
- environmental toxins
- physical trauma (such as surgery or car accident)
- genetics (like many other chronic diseases, ME/CFS can run in families, although the specific genes involved haven’t yet been identified and more research is needed)
- physical, mental or emotional stress may also contribute to the onset of the condition
For some people, ME/CFS comes on suddenly. For others, there is a gradual onset over months or years. It is not currently understood why there are these differences in how the illness starts.
Celebrity Story – Tiffiny Hall
Fitness Guru Tiffiny Hall battles with CFS – learn more about her story here.
Melville mums share their stories
We have a couple of amazing mums from the Melville Mums Facebook group who have shared their experiences in the hope that it will raise awareness of ME/CFS and shine a light on living with it.
“I spent my formative years stuck in bed. I played basketball, swam and danced seven times a week. Then I got severe glandular fever at around 13 and never fully recovered, then a head injury triggered the illness. It took years for a diagnosis of Chronic Fatigue Syndrome, as it’s pretty much a process of elimination (I can’t even tell you how many tests and specialists I saw). During my final few years of high school I only made it in-person for maybe half a day a fortnight. I’m not sure how but I managed to complete my TEE and get into my first preference uni degree, but I did. Because everything was so hard I made sure to use what little energy I had wisely, and was determined to succeed. I graduated, got a first placement graduate job, and continued with my career, all while putting the rest of my “life” on the back-burner; choosing to focus on multiple things with my energy was a luxury I didn’t have. You can’t really do it all – you’ve got to choose.
I can’t tell you how long I’ve been sick for; I’d guess almost 20 years (wow doing that maths was a shock to the system). After a while my illness eventually progressed to Fibromyalgia. It hasn’t gotten better since high school; I’ve just gotten better at adapting and knowing my limits.
It’s hard to explain what it feels like, however the one I often use is: “it’s kinda like you’ve just run a marathon with an extremely bad flu, while hungover, and also every muscle in your body is pulled. Oh and you haven’t slept for three days. Then times it by ten.” That, or: “everything hurts, all the time, always.”
Despite this I still managed to have two beautiful babies and am currently in the thick of the “surviving, not yet thriving” stage of juggling a very active toddler and an infant, while struggling to get out of bed each day. While I don’t foresee ever recovering, I’ve definitely learnt a lot over the decades (!!) about how to manage the symptoms, what my limits are, and how to say no. And I’m so lucky to have an amazing partner, family and friends there to help when I need it (and to keep inviting me to hang out – even if I cancel more often than not).
Here are a few things I wish people knew about those living with invisible illnesses like CFS / FMS:
- we might look “normal and healthy” but it doesn’t mean we are. You only see a snapshot. An hour, maybe two, that we put an insane amount of effort into so we appear our best. You probably don’t know it takes hours to get ready (and five layers or concealer to lessen the dark circles), or the tears when you’ve overdone it.
- Spontaneous outings / events will send us into a panic spiral as we need to pre-plan everything to know we’ll be able to make it through. One thing a day is all most of us can handle (and sometimes that one thing is just a shower).
- We will say no to things. A lot. Please, please don’t stop inviting us. We still want to be included; sometimes we might actually rock up!
- Offer to take the kids, or bring food, or come to us. Even lifting kids in and out of car seats is a struggle.
- We have extreme mum guilt. We can’t all run or jump or skip or play sports with our kids like most other mums can. And that guilt never goes away.
- CFS isn’t just “being tired all the time.” That’s just one symptom of the disease.
- You can’t get better by “sleeping more” (in fact a symptom of CFS/FMS is actually insomnia).
- There is no real cure. You can do things to try and tackle some of the individual symptoms (like painkillers) but nothing really works. And yes, we’ve tried it all.
- We actually love if you ask questions; it shows you genuinely care and want to learn more about what we deal with.
- Want to understand a bit more about what it’s like? Read the “spoon theory.”
CFS & Me…This is some of my story (it’s a long one)
“Spoiler alert… My story has a positive outcome & it is with the support of my family, friends and a very passionate naturopathic physician that got me through it.
Where do I start? How do I start? Just starting something can sometimes be the hardest part, literally.
What would you consider to be physical activity? If you don’t suffer from CFS then you’re probably thinking, go for a run, swimming, playing football, go to the gym; well for me at my lowest point, physical activity was lifting a fork to eat my dinner. I was sat at the dinner table with my family, I was so completely exhausted & fatigued that I couldn’t even lift the fork to eat my dinner. I cried, my 5 year old daughter offered to help me, I sat there, head in hands & I sobbed. It was a real low point, but for others suffering with Chronic Fatigue Syndrome, physical activity can be as simple as sitting, they spend their days in bed. For me, driving at times was hard, holding my hands on the steering wheel was exhausting; having a shower was tiring, washing my hair was exhausting, I would need to rest after. Exercise isn’t even on the cards when you have CFS, you need to reserve your energy every day.
I remember driving home from my parents one day & I broke down in tears when I got home, I was physically & mentally exhausted from the journey. For those of you who aren’t familiar with the term Chronic Fatigue Syndrome (CFS), healthdirect says it “is an illness that causes extreme fatigue that cannot be explained by any other medical condition….The most common symptom is ongoing, unexplained overwhelming tiredness or fatigue as a result of minimal physical or mental effort. This is known as post-exertional malaise (PEM). Other symptoms may include headaches, muscle pain, joint pain, sore throat, loss of memory or poor concentration, not feeling refreshed after sleep, enlarged lymph nodes.”
My symptoms were:
- Extreme Fatigue
- Muscle Fatigue in legs, arms and neck
- Feeling of spaced out
- Occasional Nausea after eating
- Pins & Needles in fingers & toes
- Sore feet, shins, knees – pressure/burning, especially first thing in the morning
- Electric shock sensation in left thigh
- Twinging/Tightening of leg & arm muscles
- Foggy eyes
- Mood swings – anger, irritability
- Feeling very low
- Not waking up feeling refreshed after a full nights sleep
- Occasional forgetfulness/short term memory/brain fog
- A bit more sensitive to high pitched noises in my right ear
- Occasional Sore Throat
This is my story. Most of these symptoms had been underlying for longer than I can note, but the main symptoms stepped up after Christmas in 2019 and became more prominent in January 2020. In February I went to see my GP highlighting the main symptoms, she requested some blood tests checking me for a number of possible causes including low iron, thyroid problems, early menopause, Coeliac disease, amongst others, with no conclusion. My iron came back low and my Vitamin D was also low, so I was prescribed some supplements. On my third visit still complaining that symptoms had gotten worse, the tingling was all the time and my arm muscles were so weak I had trouble keeping them on the steering wheel whilst driving, she referred me to the emergency department so that I could see a neurologist. I think everyone was concerned there may have been something wrong with my brain or spinal cord, because of all the tingling & muscle weakness. That was Monday 9th March 2020. They gave me a CAT scan & thankfully no sign of anything wrong with my brain. Then they thought maybe it was MS, so I had to stay in hospital under observation whilst I waited for an MRI scan. I went through countless examinations for my nerve responses, my husband made me laugh when he compared these simple set of tests to a children’s magic show, as there was nothing fancy or technical with what they did & how they did it. In fact the photo here is me smiling after a nerve test in Emergency Department. .Days later, after long days and lonely nights in the hospital, the MRI scan came & went and showed no signs of damage anywhere, so the neurologist told me I was probably stressed, I should remove any unnecessary stress & now that I know it’s nothing serious, the symptoms will likely subside. They didn’t, they got worse. Not only did they get worse, but the Doctors made me feel like I was either making it up or exaggerating. It’s frustrating when stress is often the first answer and the only answer from doctors. My sister, whilst I was in hospital, suggested the possibility of CFS and it was only because of her, that I decided to explore this option further on my own accord and contacted a Wellness Centre. This was the best thing I did!
I finally felt heard! I finished explaining EVERYTHING to my physician and I was told I was “textbook chronic fatigue syndrome”. I was so relieved that someone was able to put a label on what I was going through and even better she explained to me that chronic fatigue syndrome is a symptom of something else and we needed to investigate what this something else was. I came away from my appointment so happy that I could get better. I didn’t want to resign myself to the fact that this was me for the rest of my life. I couldn’t play with my children, I couldn’t chase them, I couldn’t dance with them, my mood was so low I thought I had depression…I probably did to some level. But to be told that I will get better was the weight of the world being lifted off my shoulders. I went away so happy that there was a light at the end of the tunnel & that this was something I can work on to feel better. I wasn’t expecting miracles but in that first week of taking the prescribed supplements I started to feel better. The results from my endless tests revealed so much going on inside my body, that my GP would never have found.
I will note that none of the testing, appointments, medicine is supported by the government health care & is no longer covered by health insurance. We were in a very fortunate position to be able to afford this level of care, as I know there are so many people suffering with ‘mysterious illnesses’ that can’t afford this level of help & investigation. It makes me angry that it’s not supported by the government.
I got lucky, my journey with my naturopathic physician was life changing. I can run around with my children, I can wash my hair without feeling exhausted, I can walk the dog on the beach without losing my breath or my muscles aching. I still have my off days and I need to stay on top of my supplements and my diet to control my CFS but overall I am a different person to what I was 12 months ago. I know other’s aren’t as lucky and my heart aches for them, because no one really understands CFS if you haven’t had CFS.
Have a look at the Emerge Australia website for some great resources on ME/CFS.