Source: Open Medicine Foundation
Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a systemic neuroimmune condition characterised by “post-exertional malaise” (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25-30% of patients housebound or bedbound. For moderate to severe patients, living with ME is like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades.
Up to 91% of people with ME/CFS have not been diagnosed. These people are not receiving appropriate treatments or healthcare advice.1
It is estimated* that at least 1,000,000 Americans, 250,000 British people, 100,000 Australians, and 100,000 Canadians have ME. An estimated 75-85% of them are women and 80-90% of them are undiagnosed. Unfortunately there are currently no estimates for South Africa.
ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It is also called just ME or CFS, or SEID (Systemic Exertion Intolerance Disease). There is a lot of controversy among patients and medical professionals as to the correct terminology and definition of the disease.
ME/CFS includes debilitating fatigue that is constant or recurring. This is not tired because you’ve had a long day, it’s the kind of fatigue you experience when you have the flu or are undergoing chemotherapy. Some patients describe this as feeling like they have lead in their body or that they have no energy, like a dead battery.
But it also has other symptoms, such as waking up feeling drained or like you have a hangover. Most of these patients take more time (up to two hours) to transition from sleeping to awake activity. They may have insomnia or require more than eight hours of sleep, yet still not feel refreshed in the mornings.
ME/CFS also includes trouble with thinking abilities. This could include the inability to process new information quickly (such as when given driving directions or asked to remember a phone number). It could include the inability to do maths in your head or difficulty multitasking. Forgetting words or getting your “wires crossed” is also commonly reported in those with ME/CFS.
Another symptom, orthostatic intolerance, may make a person uncomfortable standing in one place long. The patient feels a strong urge to lie down or they may feel dizzy. Often patients unconsciously compensate by folding their legs when they sit down or shifting their weight from one leg to another when they stand. They may not know why, but they avoid lines, doing dishes at a sink, or standing at a sink to brush their teeth. Standing in a hot shower exacerbates this feature of the disease.
Other symptoms some patients experience include muscle pain, sore throat, swollen lymph nodes, sound and light sensitivity, cold and heat sensitivity, headaches, easy bruising, and vertigo. In all, about 60 different symptoms can occur with the disease, and each patient’s symptom profile may be different.
For more details, please see The Hummingbirds’ Guide to ME’s comprehensive list of symptoms.
One symptom or timing of symptoms has been described as the distinguishing hallmark of the disease. Referred to as “post-exertional malaise,” ME/CFS patients with mild or moderate cases may have brief periods without noticeable fatigue or other symptoms. But it doesn’t last long. Then within hours or a few days of the activity, the patient experiences a “crash” of feeling sick, so sick they can’t function.2,3 It may last hours, days, or weeks. Depending on how bad the episode is, the “crash” symptoms may include hoarse voice, debilitating fatigue, mental fog, body aches, headache, hot and cold flashes, nausea, and vomiting. In these cases, some patients find they can start off at work feeling pretty good on Monday because they rested over the weekend. Then they find that by Tuesday afternoon or Wednesday, they are struggling to finish the work day. In addition to mental or physical activity, other triggers for a “crash” include infections, surgery, an accident, or stress.
Severe cases, about 25 percent of the estimated 1 million Americans with the disease, struggle to take care of their daily needs, such as changing clothes and preparing a meal.4 And some of those are totally bed-bound and too weak to feed themselves or even talk.
The disease can be triggered by an infection or series of infections, surgery, another illness, an accident, or any other physical or emotional stressor. It may come on gradually or suddenly. Commonly, people with the disease say they feel they caught a flu, but it never went away. Some report the symptoms starting one day without any apparent trigger. ME/CFS seems to have a genetic component because it occurs more often among blood relatives.
If you suspect you have this disease, you will want to discuss this with your doctor, who will want to rule out another illness that have a similar presentation, such as fibromyalgia, hypothyroidism, cardiac dysfunctions, an infection, or depression. Of course, it is possible a person could have one of these other conditions and also have ME/CFS. Women ages 35-50 are at a higher risk of coming down with this disease. The second most common group to develop it includes boys and girls in their adolescence (ages 11-23). However, it can strike anyone, including men and young children.
There is no single laboratory test that can diagnose ME. Patients have consistent biological abnormalities demonstrated in research settings. Many specialist physicians use these tests to aid in forming a diagnosis, although the diagnosis is at present most frequently made by excluding other conditions that cause similar symptoms and by using one of several diagnostic criteria. Due to lack of education and awareness about ME, many patients are undiagnosed, misdiagnosed with other conditions, or told that their severe disabilities are imagined.
Research has revealed brain inflammation, systemic inflammation, low blood volume, immune system deficiency, abnormal gene reactions to exercise, abnormal energy metabolism in response to exercise, and abnormalities in the hypothalamic/adrenal/pituitary system. But none of these biological findings have led to a widely accepted diagnostic marker or led to an understanding of the cause of all the symptoms.
Mental and physical activity pacing (limiting type and duration and including rest periods throughout), avoiding stressors, and using supplements or medications to gain some control of the symptoms are the only treatments available at this time. Counseling (sometimes erroneously referred to as “cognitive behavior therapy”) may help a person adjust to and effectively cope with the new limitations of the disease. There is currently no medicine that impacts the cause of the symptoms.
There is no single universally approved treatment for ME/CFS. The CDC and other agencies acknowledge treating the disease is complicated by the unknown cause. Because many ME/CFS patients’ symptoms vary over time, specialists often suggest treatments that are highly personalised and change treatment protocols frequently.
For decades, ME/CFS has received very little research funding compared to other diseases, many not as severe or as common. This disease consumes much of the family resources and time, so patients and their families have not been able to orchestrate an organised and sustainable advocacy or lobbying effort to motivate more research funding. Yet, recent discoveries show we are on the precipice of breaking open the mysteries and bringing validation and relief to those who currently suffer.
This is why research in ME/CFS is a priority, especially since discoveries in ME/CFS will most likely lead to a better understanding of the symptom mechanisms in similar neuro-immune diseases, such as fibromyalgia, Lyme disease, Gulf War illness, and multiple sclerosis.
* Estimates vary depending on the diagnostic criteria used.