It has come to my attention that while I write this blog from the perspective of someone suffering from ME/CFS, there may be many reading who are not entirely familiar with the disease. So I decided to write a guide to ME/CFS for the uninitiated, covering everything from symptoms to prognosis, treatment and research. I hope it will contain some information for the seasoned spoonie too.
I can’t pretend to be an expert – this series is based on my 6 years of living with the disease, as well as reading books by authoritative experts in the field and other research (such as patient surveys, ME/CFS organisations, news articles, books and journal articles). It is my experience that patients know far, far more about their illnesses than many medical professionals, solely based on their experience living with the illness 24/7.
Compiling this information was made difficult by the paucity of information available about ME/CFS. The lack of research funding is a repeating refrain in this piece, and so often my response to a topic is “I don’t know.” But I feel it is important to highlight the lack of information to provide an impetus for more research funding, rather than fill the gaps with junk science.
In these posts, I wish to clearly elucidate exactly what ME/CFS is, how it affects me (and many others), and what it is not. I’ll be honest: my cognitive dysfunction is extreme, and writing this nearly killed me, but it is worth it if I can educate just one person about this horrendous illness. I welcome feedback & CC.
There is a lot of information to share, so I’ve split it into a five-part series, which I will share every week. This introductory post is quite a lengthy one, as I describe the nature and symptoms of ME/CFS. A warning: tune out now if you don’t like puns and memes. If you do, read on!
Thanks also to my friend Kaz for the idea for this series.
What is ME/CFS?
Despite the ubiquity of ME/CFS, it surprises me how few people truly understand the nature of the disease. Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a systemic, chronic disease which is characterised by profound and prolonged fatigue which is unalleviated by rest; sensory disturbances; muscle pain and failure; and abnormally severe and long-lasting reactions to physical and mental exertion. WHO classifies ME/CFS as a neurological illness: it is not just “being tired” or even “chronically fatigued” (the word syndrome is used to differentiate it from ordinary cases of fatigue).
ME/CFS is a serious, biological, and debilitating illness which severely limits the activities and lives of its patients. Specific symptoms range from patient to patient, but can be broadly grouped as post-exertional neuroimmune exhaustion, neurological impairments, immunological impairments and energy production/transport impairments. There is no known treatment or cure, and the rate of recovery is very low.
Estimates vary, but ME/CFS is thought to affect approximately 1-2% of the global population. To put this in perspective, 0.1% of Australians have MS, and about 1% have coeliac disease. The burden of disease on the population is so great than in 2004, it was estimated to have cost the US economy $9.1 billion. Currently, each ME/CFS case in Australia is estimated to cost $21,000 annually, in diagnosis and management, plus lost costs of productivity. Clearly, ME/CFS is a problem which affects us all.
The average age of onset is 33, though this disease can be experienced in all age groups. It affects more women than men, to a scale of 3 to 1. I suspect this may be due to the nature of ME/CFS as a diagnosis of exclusion – there is certainly a large subset of those diagnosed who are later found to have another chronic illness. As men’s complaints are taken more seriously by the medical profession, it is likely that their symptoms will be more thoroughly investigated and other underlying causes determined. Whereas it is all-too-easy for a doctor to lump women in the “too-hard” basket and stamp them with the label “CFS”. There is no correlation of socioeconomic group to ME/CFS. (Don’t you dare say “yuppie flu.”)
Some epidemiological studies suggest that ME/CFS is most prevalent among well-educated white women. This may be the case, but it is true that this group is most likely to seek access to the healthcare system. Black, indigenous, POC, low socioeconomic, LGBTQI+ and other marginalised groups are likely underrepresented in research as the healthcare system is least accessible to them, with further studies confirming this initial assumption may be incorrect. This issue is further conflated by the fact that a single case definition is not well accepted among researchers, and many studies use very broad definitions of “fatigue” which may capture a far wider sample than those with the specific illness, ME/CFS. (The high prevalence in women, however, is maintained in each study.)
It is also important to note that although many practitioners will claim a link between weight and ME/CFS, the functional capacity of those with ME/CFS is markedly worse than those of a similar weight without that diagnosis, regardless of what that weight is. But again, a practitioners’ biases towards weight is most likely to result in poorer quality of healthcare.
ME/CFS is often precipitated by viral infections, such as glandular fever (mononucleosis), or Ross River virus. Please keep in mind that if your symptoms do not persist for more than 6 months you cannot have ME/CFS: you most likely have one of these viral conditions or a post-viral fatigue. The disease is commonly comorbid with allergies and food intolerances, IBS, dysautonomia and multiple chemical sensitivity (as we will see below). It is often linked to fibromyalgia, which is similar, but fibromyalgia patients experience less fatigue and more pain. Fibro (broadly) differs from ME/CFS in that fibro sufferers are encouraged to exercise to prevent pain, whereas ME/CFS is defined by its sufferers inability to exercise without negative reactions.
Diagnosis & Symptoms
In my experience, the breadth and depth of symptoms of this disease are not well-known. It often shocks people when I speak of the impact of overexerting myself, which can last days, weeks or months; the sensory overload; and the continual, random passing out. (Seriously guys, if passing out all the time was my only problem, I’d be the happiest person on earth!)
The Institute of Medicine (IOM) recently revised their diagnostic criteria for ME/CFS. The defining symptoms are:
- A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and
- Post-exertional malaise,* and
- Unrefreshing sleep*
At least one of the two following manifestations is also required:
- Cognitive impairment* or
- Orthostatic intolerance
* Frequency and severity of symptoms should be assessed. The diagnosis should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.
I expect many of these terms sound foreign to you! I wish they were to me – sometimes having a chronic illness can be like learning a new language. I’ll break it down for you.
Post-exertional malaise (PEM) is the severe, prolonged, reaction to being exposed to any kind of exertion: physical, cognitive or sensory. As mentioned above, it can last hours, days, weeks, months, or in some cases, cause a permanent reduction in ability. For instance, I have never recovered from my ill-advised graded exercise therapy I engaged in well over three years ago.
These after-effects generally do not present until some time after the activity has ended, making it very difficult to gauge how well one can tolerate said activity. An example is going out for lunch and shopping with a friend: I enjoy myself and don’t feel too fatigued during the session as I am having so much fun, though I do find myself weary towards the end. Later that night, as I am trying to sleep, I am feverish, sweating, shivering and shaking. The room is spinning around me and I feel I am going to pass out from vertigo. I cannot sleep. The next morning, I pass out as I prepare breakfast.
PEM is regarded as one of the defining symptoms of ME/CFS. All those who have chronic illnesses will experience “payback” after an activity, but not to the disproportional degree that ME/CFS sufferers will. There is biological evidence that the cells of those with ME/CFS have an impaired response to physical exercise, and that sufferers experience impaired cognitive function after exercise.
Cognitive impairment, or “brain fog”, is one of the symptoms which most surprises those who are not familiar with the disease. It can cause impaired concentration, short term memory loss, inability to retrieve words, confusion, blurred vision, disorientation and ataxia.
Brain fog is by far my most debilitating symptom. It is what keeps me mostly housebound, and has made me bedbound in the past. It is like thinking through a thick soup, not being able to clearly discern thoughts from mush. Some days, I cannot string two words together, and the sounds coming from my family’s mouths seem more like garbled nonsense than coherent speech. People appear like cardboard cutouts against an ever-moving background.
I know of some, who, once they have hit the mental “brick wall,” can do nothing more than lie in bed and drool into a bucket. Others cannot drive, cannot work, and some lose the power of speech altogether.
“I get close to incoherent. I can’t make sense, and nobody can make much sense out of what I say. I am used to it now and try to make a joke out of it, but it’s sad.”
– Dr Mary Schweitzer on post-exertional malaise
Sensory processing disorder is a linked symptom, or secondary condition. It wasn’t specifically mentioned in the diagnostic criteria, but I will lump it under “cognitive impairment.” You may know it as a characteristic of those on the autism spectrum. Many ME/CFS sufferers have extreme reactions to sensory stimuli, such as light, sound, people, movement and heat/cold. They can be as harmful to a patient as extreme exercise. Affected patients (myself included) cope by avoiding brightly lit stores and wearing sunglasses outside, sticking to quiet environments, employing the judicious use of earplugs when necessary, and keeping mostly to themselves. When in bed, I could not tolerate light, sound, or even the presence of another person in the room, they were so damaging to my health. I spent my time cocooned alone in a dark room, with earplugs blocking out any sound. It was a terribly lonely existence.
Recently, I had a sensory assessment done, primarily so I could receive advice from a psychologist who specialised in the condition. I scored higher on every category than any other patient she had seen before (including her patients with intellectual disabilities and those on the autism spectrum). Guess I can’t help being a goddamn overachiever.
The alternative criterion to cognitive impairment is orthostatic intolerance (though many, myself included, are lucky enough to experience both). Orthostatic intolerance (OI) is a broad term for a range of disorders which cause debilitating symptoms when standing, and are relieved when prone. Greg Page, the yellow Wiggle, brought OI into the public eye when he had to quit The Wiggles due to his symptoms. (He later recovered enough to work with a less demanding band, then rejoin The Wiggles. Sorry Sam.)
I have orthostatic hypotension with tachychardia, which means when I am upright for too long, the blood in my body pools in my feet. My blood vessels simply can’t constrict enough to keep blood where it should be. As you may be aware, our bodies need blood to function (who knew?), and the heart and brain don’t like being without it for long. My BP drops dramatically, and my heart rate rises as my heart tries in vain to pump blood to my brain. I experience tachycardia, and my brain struggles to function ordinarily as it is starved of oxygen – much like you feel before you die. Eventually, I pass out so my body can force me into a prone position.
Orthostatic hypotension with tachychardia, and other forms of dysautonomia, are not well understood diseases (do you notice a theme here?). They are generally treated with a scatter-gun approach of industrial-grade compression stockings (all the way up to your waist, otherwise don’t bother), increased water and salt intake (ALL THE MSG FOR ME!), very carefully managed exercise and various medicines. They also give you a cool party trick of fainting at random intervals.
Other symptoms, not detailed above, include:
- pain, ranging in severity and type, such as neuropathic pain, joint pain, muscle pain, and headaches. Personally my joints and muscles ache like I have the flu all the time, and my head feels like it is in a car-crusher, with millions of knives stabbing into it, 24/7. I laugh at those who complain about a 2-day headache on Facebook. (That’s a lie. I cry.)
- immune dysfunction such as susceptibility to viral infections
- gastrointestinal impairments – lactose and other food intolerances are very common in ME/CFS patients, as is IBS.
- expressive aphasia
- fever and sweats
- genitourinary impairments
- sore throat (it’s like glandular fever never left!)
- painful or tender lymph nodes (ditto)
- sensitivity to external stimuli (e.g., foods, drugs, chemicals) – many suffer from multiple chemical sensitivity, which severely restricts the patient’s life.
- flu-like symptoms
- heavy limbs
- incontinence (I am QUEEN of the incontinence pad. I even made my own!)
- spatial disorientation, dizziness and fainting (most likely caused by OI)
- muscle complaints: twitching, weakness, poor coordination, ataxia
- cold extremities
- nausea and vertigo (some of my worst symptoms)
- respiratory complaints such as shortness of breath
- emotional lability and mood fluctuations*
So when someone next tells you they have CFS because they “get a bit tired,” feel free to slap them with a copy of the IOM report.
Thanks for sticking with me through my introduction to ME/CFS! Next week I’ll be talking talking prognosis, severity and scales of symptoms. I’ll also share some experiences from severely affected patients. Til next time!
*Note that there are many more symptoms, and other commonly accepted criteria. The International Consensus Criteria is a good place to start.
Thanks for reading my Dummies’ Guide to ME/CFS! You can find the other posts here:
Part I, Intro