Two and a half years ago I was diagnosed with “Chronic Fatigue Syndrome” (CFS), also known as Myalgic Encephalomyelitis (ME), after having had symptoms for over a decade. There are many misconceptions around this disease, even among doctors. As a patient, you’re often left on your own to do your own research and it takes a lot of talking to other patients to learn what this illness even is. So in this post, I want to raise some awareness and share 5 things I wish people understood about ME/CFS.
1. It is not the same thing as chronic fatigue
Chronic fatigue is a symptom of many different illnesses and diseases, from autoimmune disease to vitamin deficits to depression. It’s also a symptom of ME/CFS, but the fact that you suffer from chronic fatigue does not mean you have “Chronic Fatigue Syndrome”. To be diagnosed with ME/CFS, you need to have several other symptoms as well, and other possible diseases must be ruled out first (although there certainly can be co-morbidities). But even doctors sometimes use Chronic Fatigue Syndrome as another name for idiopathic chronic fatigue – chronic fatigue without a known cause. Often, the diagnostic criteria used for CFS are very broad and do not properly exclude other illnesses. It’s why most ME/CFS sufferers prefer the older name for the disease: Myalgic Encephalomyelitis.
2. The fatigue is not just “being tired”
When people hear the word fatigue, they often think of being tired all the time. But “chronic fatigue” in any illness is so much more than being tired. Of course I can’t speak for how it feels in other illnesses, but in ME/CFS, it’s often described as a flu-like feeling or a feeling of malaise, which is often accompanied with brain fog and other cognitive problems. For severely affected people it can even make them physically unable to get out of bed. Then we also have something called “Post-Exertional Malaise” (PEM) or “Post-Exertional Neuroimmune Exhaustion” (PENE). It means that when you overexert yourself, either physically or mentally, your symptoms get worse. Some patients experience a crash that can leave them bedbound for weeks, and for some patients even activities like taking a shower can trigger this. PEM is often considered the hallmark symptom for ME/CFS rather than fatigue.
3. It comes with many other symptoms
I briefly mentioned this already, but ME/CFS comes with many, many more symptoms than just chronic fatigue. In the previous point I already explained PEM; but other common symptoms are sleep disturbance and unrefreshing sleep, muscle weakness, muscle and joint pain, orthostatic intolerance, gastrointestinal symptoms, cognitive dysfunction and brain fog, cold and/or heat intolerance and sensitivities to light, sound or touch. It’s a multi-system disease, meaning that it affects many different bodily systems such as both the central and autonomic nervous systems, the immune system, the digestive system, the cardiovascular system and many more. Not all systems are equally affected in everyone who has ME/CFS, so not everyone is going to have the exact same symptoms. It depends on the criteria used which symptoms are necessary for a diagnosis, but the International Consensus Criteria are often considered to be the most precise.
4. It is not psychosomatic
Although there is a lot of research out there that shows there are many physical abnormalities in ME/CFS, the cause of the illness is still unknown and there are no biomarkers found yet. And when no abnormalities or established illnesses are found, the response is way too often that “it’s all just in your head”. Historically, especially women were often accused of hysteria. The underlying assumption these days is that medical science already knows everything there is to know, so if they can’t find anything, it must be psychosomatic. With ME/CFS the idea is often that it’s caused by false illness beliefs – you only feel sick because you think you are sick. This is, of course, incredibly stigmatising. We know our illness is physical in the same way you know the flu is physical. Plus, it sounds a lot like “you’re not actually sick, you have a mental illness”, which is incredibly stigmatising towards mental illness as well – mental illnesses are just as real as physical illnesses and shouldn’t be used as a waste bin for everything we don’t understand. Many physical illnesses such as Parkinson’s, stomach ulcers and even asthma were once seen as “psychosomatic” until we found their cause. With all the research out there, it is only a matter of time until we find the cause of ME/CFS too.
5. There is currently no treatment or cure
Because we don’t know the cause of the illness yet, there is also no treatment or cure. Often, the only treatments that get offered are Cognitive Behavioural Therapy and Graded Exercise Therapy – but that is based on the idea that ME/CFS is psychosomatic. The biggest study that claimed to have proven the effectiveness of these treatments, the PACE trial, is highly flawed and has been exposed as bad science. Yet, the idea that we just have to exercise and “push through” is still everywhere and is sometimes even being recommended by doctors who do understand ME/CFS is not psychosomatic, simply because it’s what they have been taught.
Some people manage to feel a little better with certain supplements or diet changes, and sometimes certain symptoms can be controlled with medication. But there is still no reliable treatment, let alone a cure. I already said there’s some amazing research out there – but there’s a serious lack of funding. That’s why awareness is so important. Fortunately, it seems like things are slowly changing. Despite all the stigma, there’s also an increasing amount of people who do understand the severity of the illness, and research into the physical causes of the illness is growing. I think there’s enough reason to be hopeful about the future.