May is Myalgic Encephalomyelitis (ME) Awareness Month

May is Myalgic Encephalomyelitis (ME) Awareness Month — a time to confront one of the most misunderstood and devastating chronic illnesses in modern medicine. For many living with ME, simply surviving the day can require enormous physical and mental effort, while decades of medical dismissal have left patients isolated, disbelieved and without effective treatment.

What is Myalgic Encephalomyelitis (ME)? 

(Also known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Myalgia being muscle pain and encephalomyelitis being inflammation of the brain and spinal cord.)

The chronic fatigue syndrome label was applied by the medical profession who would not accept that ME was a real illness. For decades the profession insisted that ME was a psychological affliction that was best treated by getting patients active again through planned graded exercise programmes, with generally disastrous results that left patients worse off. 

While the medical profession in many countries now accept that this is a genuine illness, and is accepted as such by the World Health Organisation (who use the Myalgic Encephalomyelitis label) there are still far too many medical professionals who insist on calling it chronic fatigue syndrome. This continues regardless of recent research which has confirmed encephalomyelitis and other structural changes in the brain of ME patients. There is also evidence that ME may affect the ability of mitochondria in the cells to produce energy.

I understand that unless things have changed in recent years, doctor training in New Zealand does not include ME. If doctors are aware of it, they use the chronic fatigue label, not that this means they know much about it.

Take note of this – you can be certain that someone you know or know of has or will get this illness and if luck fails you, it could very well be you that joins the ME community, also known as ‘millions missing.’ The condition known as long COVID would appear to be yet another manifestation of this horrid illness. 

Why is ME still so misunderstood?

Over the past decade there have been increasing levels of research being carried out around the world, but as yet there have not been any conclusive discoveries about causes, what it does to the body, and treatment. While there are some medications that seem to alleviate the symptoms, there is no cure. 

It would seem there are multiple causes, the predominate one being a post viral condition of some sort, which suggests that the body has gone into an overactive immune response. Long COVID could be implicated in this. 

Anecdotally, one would have to wonder if there is an undiscovered infective agent, e.g., some kind of virus, given that there are many cases on record where a community has been afflicted. The most well known one in New Zealand was in the Southland community of Tapanui in the early 1980s, resulting in the label ‘Tapanui Flu’ that you may have heard of.

Another possible cause is a sustained period of prolonged and intense stress, and again anecdotally,  so-called ‘type A’ personalities seem to be more likely to come down with ME.

‘Type A personality is characterised by traits like competitiveness, drive, ambition, and urgency. People with this personality type are achievement-oriented, fast-paced, and impatient. They are often good at reaching their goals, but they may also have increased stress and other health risks.’

I would also wonder if there is a genetic predisposition to getting ME, given that it is not unknown for several family members, living far apart, to come down with it.

Age is no barrier, there are many tragic cases of teenagers with this affliction. Females seem to be more likely than males to get ME.

A severe chronic illness destroyed my principal’s career at the end of 2011, but at that stage I had no idea what was happening. In 2012 this illness was diagnosed as ME, although that’s really not what happened. There is no test for ME, so any outcome that suggests the illness is ME occurs after a battery of tests for other possible illnesses prove to be negative.

 In my case I spent the best part of a day at the hospital, feeling like a pin cushion, before I was told that I probably had chronic fatigue syndrome. And that was all I was told. No treatment plans, no information, just to go home and deal with it, and on top of that my GP had nothing to offer.

Thank goodness for the internet,  and especially the Associated New Zealand ME Society (ANZMES) ‘serving New Zealanders with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome since 1980.’

Without both of those sources I don’t know how I would have coped.

The ME got far worse as 2012 passed and I hit rock bottom in 2013. Most of the following five years or so was hell, when I was effectively a ‘non-person’, unable to do much outside of the house. I got to experience life in a wheelchair for much of that time. Couldn’t read, couldn’t listen to any sort of music (a life long interest) and even TV was at times too much. Short YouTube videos were all I could cope with.

I’ve been fortunate in that I had a partial recovery since those days, so I’ve been able to live a more ‘normal’ life – I have better days and worse days, but overall I’ve been able to live. I’d guess my best days are 80% of normal, which after the bad years is a blessing.

Far too many others are far worse off, having been severely ill for decades without any improvement, and some dying from the effects of this ghastly affliction.

I still have days when I spend most of the time reclining in my lazy boy chair, unable to do much at all. This makes it very difficult to commit to attending meetings and other functions. 

One of the deadening effects of ME is what is known as ‘brain fog’ where thinking becomes impossible – the intellectual equivalent of trying to run through treacle. It wasn’t uncommon for me to start saying something and then stop as I’d forgotten what it was I was trying to say. Trying to think, for example doing a simple mathematical problem, was impossible. 

Others report feeling pressure inside their heads when trying to think, as though their brains were too big for their skulls. 

Brain fog is hard to describe in words, you have to experience it to understand it, and believe me, you don’t want to do that.

Writing was even worse. I could barely write a coherent sentence. Back in 2014 I was struggling to write articles for this blog, I got to the stage where this became impossible and so I had to give up

Fortunately in 2026 I am able to write, albeit not as well as in my healthy days. There are still spells when I can’t write, the words just won’t flow, hence the sometimes spasmodic gaps between articles.

The defining feature of ME, that distinguishes it from other illnesses that result in fatigue, is  ‘post exertion malaise’ (PEM).

What does living with ME actually feel like?

This is a weird condition that defies explanation. PEM can strike anywhere between 24 and 72 hours after any kind of exercise. Fatigue without PEM is unlikely to be ME. This crash is not easily describable – being hit by a truck is one way of trying to explain this. Or, to be more accurate, being repeatedly hit by a convoy of trucks as the crash is ongoing. 

At the time the exercise often doesn’t cause any issues, leading to a feeling of hope that maybe I’m getting better. A couple of days later, oh boy, do I pay for it, and this can last days, weeks, or even longer.  

There’s no predicting this, and the only way to limit its effect is the 50% rule – only do 50% of what I feel like doing and the moment I have even the slightest feeling of tiredness, stop and rest – the phrase ‘aggressive rest’ is often used. In other words, stop completely, don’t do anything that requires energy, even thinking and writing is not wise.

Disobey that rule and a ME crash is almost guaranteed. It can take days or weeks or years for some people to recover, and some never do. About a year ago I was feeling relatively good and went on a tramp for a couple of hours that involved a steep climb. Big mistake, and as yet I’ve not fully recovered from that.

The fatigue is not describable, it feels totally different from the exhaustion caused by strenuous exercise. The energy reserves are totally empty. There were times when I would struggle to raise a fork to my mouth.

ME fatigue has been likened to a failing battery in a laptop, when it takes hours to recharge and then when used the levels rapidly deplete.  It’s weird, I can be doing some activity without problems, when suddenly I feel the energy draining out of me and I need to stop and sit down asap. 

The following information is from the Chronically Rising Facebook page, which explains ME in great detail.

‘Myalgic Encephalomyelitis literally means “muscle pain with inflammation of the brain and spinal cord.” But the reality of ME goes far beyond its name.

ME is a serious, complex neurological disease that causes widespread dysfunction across multiple systems in the body. It disrupts the nervous, immune, and endocrine systems, impairs cellular energy production and ion transport, and often causes significant cardiovascular abnormalities.

This isn’t just pain and inflammation —it’s a life-altering and devastating illness:

75% of people with ME are unable to work.

25% are housebound or completely bedridden.

Many experience a quality of life worse than that of patients with end-stage cancer.

Tragically, ME can be fatal. Some very severe patients die from complications of the disease.

In countries where it’s legal, some have even chosen euthanasia due to unbearable suffering.

ME deserves awareness, research, and compassionate understanding. It’s time the world takes this disease seriously.

Why People with Myalgic Encephalomyelitis (ME) Can’t or Struggle to Work 

Describing the impossibility of employment while living with Myalgic Encephalomyelitis (ME) is like trying to explain the weight of gravity to someone floating in space. ME is a complex neurological, fluctuating and disabling disease that strips patients of the basic building blocks of daily function—let alone the capacity for work.

We are not lazy. We are not unmotivated. We are not “wasting potential.” Most of us were hardworking, driven and passionate about our careers—until ME took our ability to participate in life as we knew it.

The Disability Reality 

Only about 25% of ME patients are able to work — and many of those can only manage limited, flexible work. At the other end, 25% of people with ME are housebound or completely bedridden. Even those with “mild” ME — often invisible to others — have lost at least 50% of their pre-illness functionality.

These numbers don’t represent a lack of trying. They reflect the physical, neurological and immunological collapse that defines ME.

Post-Exertional Malaise (PEM): The Wall We Can’t Push Through 

PEM is the hallmark symptom of ME. It’s a delayed and disproportionate worsening of symptoms following even minimal physical, mental or emotional exertion. The crash usually comes 12 to 72 hours later and can last for days, weeks, months or longer. For many, the decline can be permanent.

A 2019 international survey by Holtzman et al. (n=1,534) found that 67% of people with ME reported never recovering from a crash caused by PEM.

This is not just tiredness. It’s post-exertional physiological injury. In ME, pushing through doesn’t make you stronger — it risks permanent harm. Even minimal overexertion can trigger a level of collapse some never recover from. It’s why exercise is not just unhelpful but dangerous for us.

Fluctuating Illness 

ME is a disease of instability. You might see us online one day or hear our voice in a short conversation — but not see the collapse that follows. ME doesn’t run on a schedule. Our capacity to function can change dramatically from hour to hour and day to day.

This fluctuation makes it impossible to meet deadlines, maintain fixed schedules or commit to the consistency required for employment.

Cognitive Dysfunction 

“Brain fog” sounds gentle — ME cognitive dysfunction is not. It’s memory failure, language loss, confusion, sensory overload and an inability to process basic information. Reading, speaking, typing and even thinking become physically exhausting. This is not surprising, as your brain uses 20% of your body’s energy.

Workplaces depend on sustained attention, memory and executive function. These are precisely the areas ME can impair most.

Energy Production Failure 

ME is not a condition of low motivation or simple fatigue — it’s a dysfunction in cellular energy metabolism. Our bodies cannot produce or sustain energy normally, and rest doesn’t replenish it. No sleep, vacation or energy drink will undo what this illness does at the cellular level.

Physical Limits 

Even basic physical tasks like sitting upright, getting dressed or speaking can exceed our energy envelope. Some of us need to lie down most of the day. Others collapse after simple movements. The physical exertion of daily life alone is already overwhelming—working on top of that is physiologically impossible for many.

Light Sensitivity 

Many of us can’t tolerate typical workplace lighting. Fluorescent bulbs, sunlight and screen glare can cause migraines, vertigo, visual disturbance or neurological crashes. Some live in darkened rooms permanently.

Noise Sensitivity 

Normal sound levels can be unbearable. Our nervous systems can’t filter noise like healthy ones can. A ringing phone, conversation or keyboard clatter can feel like an assault — leading to overstimulation, pain, confusion or even seizures.

Chemical Sensitivities 

Many ME patients have Multiple Chemical Sensitivities (MCS) or Mast Cell Activation Syndrome (MCAS). Scents, cleaning chemicals, laundry products and colognes — everyday in most workspaces — can cause immune reactions, neurological symptoms or even anaphylaxis.

Immunocompromised Status 

A mild virus for a coworker can be a months-long crash or permanent relapse for some of us. Many people with ME do not have robust immune systems. Shared office spaces, public transport and even remote jobs that require appointments or outings pose a major health risk for some of us.

Accessibility 

Even without wheelchairs, ME patients may need full recline, silence, minimal light, temperature control and no chemical exposure to function. These aren’t preferences—they’re survival requirements. Most workplaces aren’t designed to meet these needs.

The Emotional and Social Weight 

We live with an invisible illness in a world that demands visible proof. If we appear “well” for a moment, it’s assumed we’re fine. If we look ill, it’s assumed we’re not trying hard enough.

We’re judged for not working and also judged for trying to do anything at all. The emotional toll of constantly justifying your illness to society, friends and the system is devastating.

We Are Not “Just Tired” 

ME is not burnout. It is not depression. It is not laziness. It is a multi-system neurological disease that profoundly disables us.

Some of us write, create or advocate when able — not because we’re well enough to work, but because these brief, careful expressions are a lifeline. They do not reflect our baseline or our capacity to sustain employment.

Sometimes, survival means stepping away from everything you love just to make it to the next day.

To Employers, Friends and Society 

If someone with ME says they can’t work, believe them. We are not giving up. We are protecting what little function we have left. Even when we look okay, what you don’t see is the days or weeks of suffering that follow minimal exertion.

We’re not lazy

We’re not “burned out”

We’re physiologically ill

We’re doing our best to survive