ME stands for Myalgic Encephalomyelitis, a chronic neurological disease; it is categorised by the World Health Organisation under “Disorders of Brain” as ICD-10 G 93.3.
ME involves the central nervous system, immune system, sleep dysfunction, pain, neurological problems, cardiovascular problems, gastric problems, autonomic systems and the endocrine (hormone) system.
The best-known symptom is pathological fatigue which is not improved by resting or sleeping. Although this is frequently present, it isn’t actually necessary for a diagnosis of ME. The severe fatigue can mean that a person with ME sleeps for the majority of the time, and still wakes up feeling utterly exhausted, as though they had just run for 3 days without rest.
The defining symptom is “post-exertional neuro-immune exhaustion or malaise” (a delayed fatigue or pain after physical or mental activity): for example, instead of the body reacting to exercise by being temporarily tired, but then increasing in overall energy levels over time, the body decreases in overall energy levels. Put someone with ME on a treadmill every day, and their times and ability will get steadily worse. In ME, exercise makes you worse, not better. Do too much, and every symptom can get worse – possibly permanently. At the lightest severities, this is reaction to what any normal person would consider exertion; at the most severe, this reaction occurs to any movement or cognitive activity at all.
Other common symptoms are pain, sensitivity to light and sound, cognitive difficulties, sore throat, allergies, sensitivity to chemicals, sleep problems, heart palpitations and inability to regulate temperature, heart rate and blood pressure – by no means does this list even scratch the surface of all the stuff that goes wrong if you have ME. A better list of symptoms can be found here: http://www.hfme.org/mesymptoms.htm. Because ME is such a complex disease, involving disorder and interplay between so many bodily systems, the symptoms can vary from patient to patient – it is the physical problems causing the symptoms that define the disease, not the day-to-day experience of the sufferer.
ME sufferers cover a range of severity, but around a quarter are housebound and unable to take care of themselves. In these cases, the disease is comparable to late-stage AIDs or terminal cancer, and in the most severe cases far, far worse than even these. Ability is often described by reference to a scale (see http://www.hfme.org/themeabilityscale.htm) from 0 to 100. 100% is not at all ill; 0.5% is unable to eat, drink, or move at all; such sufferers spend all their time in the dark and are tube fed. Some sufferers get better over time; some get worse; most stay the same. Some eventually die, usually of organ failure or malnutrition when the body becomes unable to sustain itself.
What’s physically wrong?
For a more comprehensive view of this, along with some of the evidence available, see Dr Malcolm Hooper’s paper “Biomedical Evidence Summaries”, which can be found at www.stonebird.co.uk/hooper.html.
The main physical problem is dysfunction in the Central Nervous System, which is detectable by scans such as SPECT and PET, as well as neuro-psychological testing. Damage to the CNS and other nervous systems, cardiac muscle, other muscles, abnormalities in the immune and respiratory systems and mitochondrial problems are all physical contributors to the post-exertional Nnuro-immune exhaustion experienced by ME sufferers.
The mitochondria in cells (the part which create energy using oxygen) don’t function properly; the body’s primary engine is broken. This means that the body quickly switches to the secondary engine, creating energy without oxygen – fine for a few minutes, but fatal if kept up long term. Basically, every cell in the body just cannot create enough energy to run properly. Creating energy without oxygen releases lactic acid which is damaging to muscles and causes pain. Not converting oxygen to carbon dioxide changes the pH of the blood, which can cause many other problems.
Obviously having every cell in the body struggling to create the energy it needs to function causes many issues! The brain, muscles, digestive system, heart and other organs are all struggling. It means sufferers have to be careful about anything that can use up energy – extending from the obvious physical exercise, to things like exposure to light and sound and sustaining conversation.
The body struggles so much that it then reacts to normal stimuli as stressful, by going into an adrenaline response. This is fine every once in a while, but long term is extremely draining and damaging, as the body only has finite resources and isn’t taking care of itself if it’s in fight-or-flight mode.
There are many problems with producing hormones correctly, using them correctly and disposing of them correctly. Hormones control a lot of what happens in the body, such as temperature, hunger, the immune system, the reproductive cycle, switching on and off things in the brain and killing cells – thus all of these things can be mucked up by ME.
Inflammation occurs, including in the spinal cord, causing severe pain. This has been repeatedly and independently found during the autopsies of those who have died of ME.
The cause and course of ME are yet to be found, partly due to the insanely small amount of funding devoted to it. Despite the large range of physical symptoms, those suffering with ME are usually entirely ignored by the medical profession and told it’s psychosomatic or depression.
ME tends to develop after exposure to a virus or chemical poisoning (similar to other chemical poisoning diseases such as Sheep-dip flu and Gulf War Syndrome, which may in fact be the same disease). It occurs in outbreaks (approximately one every 1-2 years) and can be be passed on by blood transmission – other than this, it is not contagious. It can occur when a person is under severe stress; either because of an unreported viral or chemical exposure, or because ME is an autoimmune disease.
ME and Psychology
ME is not a psychological illness. There’s an enormous mountain of evidence for it’s physical nature, vs exactly none for it being of psychological origin. In fact, no antidepressant or counselling has ever been shown to improve the core ME symptoms, and there are numerous physical changes which do not line up with any psychiatric disorders.
Since ME can be such a debilitating illness, sufferers are prone to developing depression. Many of the more severely effected sufferers commit suicide, due to the severity of their condition and their abandonment by the medical profession.
Despite being known to be a disorder of the Central Nervous System since the 1950s, a small group of psychiatrists have made it their mission to re-classify ME as a psychiatric condition, contrary to all the evidence. The portrayal of ME in the media and to the government has been influenced heavily by people in power, to the detriment of the patients. The result of this is that almost no research into the cause of or cure for ME has been made, and instead funds diverted to methods such as CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy). There is little doubt that they are useful treatments for psychologically-caused fatigue illnesses – however ME is not such. Studies show that these methods are less effective than for ME than a placebo, and in the case of GET far more likely to cause harm than good. Trials in the UK involving these treatments only recruit patients with “CFS”, and explicitly disallow any participants with actual ME from taking part.
The psychiatric model is that patients are depressed, do not wish to be physically well, or have “false illness beliefs”, combined with muscle de=conditioning from being in bed too much. In the case of children with ME, often the parents are suspected of abusing them or having Munchausens by Proxy. This is at odds with all the physical findings, as well as the sudden onset of the disease, the positive attitude of the majority of patients, the universal desire to be better and lead a “normal life”, and the unwillingness of patients to accept their disability. In fact, the only real “false illness belief” amongst ME patients is their stubborn belief that they are still able to do things that their body simply cannot cope with anymore!
ME and CFS
Most doctors in the UK will nowadays refer to ME as CFS (Chronic Fatigue Syndrome) and diagnose it as such, despite the fact that the official classification of CFS excludes ME. CFS is instead seen as a new name for ME, but they aren’t the same: ME is a distinct disease which is physically identifiable, whereas CFS is an umbrella term for a whole host of diseases which involve fatigue as a major symptom. Other illnesses such as coeliac disease, insomnia, depression, post-viral fatigue, thyroid problems, polyps, allergies, anxiety, mercury poisoning, hypoglycemia, cancer, hepetitis, breakdowns, sleep apnoea and yeast infections have all frequently been classified as CFS. Sadly, a diagnosis of CFS is often a way of saying “we don’t know what’s wrong with you”.
Although ME is not CFS, I tend to tag posts under both labels. This is because a lot of people looking for information don’t know anything about the technically correct terms (I certainly didn’t!), or have been misinformed. In fact, most sufferers aren’t lucky enough to have a doctor who will diagnose beyond “you’re tired all the time and I don’t know why”.
ME is also known variously as Chronic Fatigue Syndrome, Chronic Fatigue and Immune Dysfunction Syndrome, Myalgic Encephalopathy, Chronic Epstein-Barr, Post-Viral Fatigue, Atypical Poliomyelitis, Atypical Multiple Sclerosis, Royal Free Disease, HIV-negative AIDS, Iceland Disease, Neurasthenia and presumably many more. As some of these names suggest, it’s similar to MS and Polio.