ARE you feeling TATT — tired all the time? It’s a common enough feeling, and could be simply because you’ve been working too hard, or just having too much fun. In that case, a good night’s sleep is usually all you need to make it go away.
When it lingers, and begins to interfere with your daily functioning at work and at play, it could signal something a little more sinister: a form of chronic fatigue syndrome (CFS).
New approaches to diagnosis and treatment aim at making things a whole lot better for sufferers, because the syndrome continues to generate controversy in medical circles, with some doctors still believing it doesn’t exist.
Or if they are prepared to acknowledge its existence, they say it is "all in the mind". In other words, CFS is just a fancy word for malingering at worst, or at best, a form of psychosomatic illness. The US Centres for Disease Control and Prevention, for example, has promoted the idea that CFS is "hysteria" or hypochondria.
In medical terms, CFS is an umbrella term — or "dirt bin", as one medical specialist put it — for a range of different maladies that have included ME (myalgic encephalomyelitis, also known as Yuppie Flu), but also fibromyalgia and adrenal fatigue.
Even those who support the existence of conditions that fall under the term, have problems with calling any one of them a true CFS, because they say that helps to trivialise the condition.
Some experts say ME is a neurological disease and is recognised as such by the World Health Organisation (WHO). Thus it can’t be the same thing as CFS, which the WHO doesn’t recognise, and which "defines a heterogeneous patient group suffering from various conditions which involve the symptom of ‘fatigue’ ".
Certainly it’s true that a vast body of research studies has documented immunological, neurological and other physiological abnormalities, and simple fatigue is not necessarily the cardinal symptom. It points more towards what scientists have called "post-exertional exhaustion", a deep depletion of energy after even minimal exercise or activity.
Still, there are many specialists, among them Prof Obedy Mwantembe, a gastroenterologist and specialist physician at the Carstenhof Clinic in Midrand, who believe CFS is a perfectly good working umbrella term, and should be retained.
Prof Mwantembe, who is also a lecturer at Pretoria University Medical School, says fatigue is a common factor, though not necessarily a defining one. He also says the incidence of CFS is growing worldwide, and it is just "a less open mind" that makes some doctors think it doesn’t exist.
He agrees, though, that medical science is still stumped when it comes to causes.
One theory that gained ground in recent years has been viral, spawning the term "post-viral fatigue syndrome".
Research has effectively debunked that theory, Prof Mwantembe says.
Most recently, in what was described as "one of the most bruising science debacles of the decade", US researchers at the Whittemore Peterson Institute for Neuro-Immune Diseases in Reno believed they were hot on the trail of the cause of CFS — a human retrovirus — but "ended up studying an artifact created in the lab", according to one writer.
A paper by the research team, led by Dr Judy Ann Mikovits, was published in the journal Science in 2009, and then retracted in 2011. Despite that, Dr Mikovits was quoted as saying that despite the disappointing results, she still believes "a human retrovirus will be discovered eventually to lie at the heart of CFS".
Another theory is that the syndrome is mainly an immune system disorder.
"This doesn’t hold up in all cases," Prof Mwantembe says.
Other research links CFS with depression. The link is there, Prof Mwantembe says, but it’s a chicken-and-egg situation.
Depression is not shown to be a cause of a CFS condition, he says, and it’s not surprising that many people will be depressed after suffering unexplained symptoms for a long period.
Cases of true clinical depression require proper treatment, he says, but that is unlikely to make the CFS go away on its own.
And while chronic fatigue syndromes are generally shown to affect more women than men — Prof Mwantembe says this shows up in his CFS patient profile — he says there is no proof that female hormones play a role.
His theory (untested) is that the gender divide is more to do with lifestyle stresses, and the amount of "organising and multi-tasking" women have to do compared with men.
He also believes that diet doesn’t play much of a role in chronic fatigue syndromes.
"There’s no harm in taking certain supplements, such as omega three essential fatty acids," he says, "but there is no evidence that food or vitamin and mineral supplementation can cure CFS."
He also points out that despite the relative newness of the controversy, CFS is not new. It was first described way back in the 1700s, when it was called Febricula — small fever, he says.
Giving more modern, specific names to the condition just makes it easier for research purposes, he says — and for treatment options.
Fortunately for those who suffer CFS, some things are proven to work, says Prof Mwantembe. One of these is cognitive behavioural therapy (CBT) — changing behaviour and thought patterns.
And no, that doesn’t prove the syndrome is indeed "all in the mind".
"Even constipation can be treated with CBT," he says. "It’s about training to think about doing things differently."
Graded exercise therapy (GET) is also proving to be helpful.
"Patients with CFS may find it painful to exercise, but it pays in time," he says.
However, treatment options can and do vary considerably, depending on the diagnosis — which itself can be problematic, as there is no blood test or other objective measure of the condition.
Diagnosis is usually made on the basis of symptoms, which can include not just fatigue but swelling, infection and pain.
In the case of adrenal fatigue, this makes for a "very murky area", Prof Mwantembe says.
It is possible, for example, to test for adrenal function, not actual adrenal fatigue.
The adrenal gland produces hormones, the most important of which is cortisol (known as the "fight or flight" hormone). Physical activity, stress, feeling threatened and infection all increase the body’s need for cortisol, he says.
There will always be some adrenal activity, but fatigue sets in when the gland becomes unable to cope with the challenges facing the body.
One of those could be TB of the adrenal gland, a condition that is not common, and more rare than a true CFS, but difficult to diagnose, Prof Mwantembe says, because by the time you can pick it up, it’s usually too late to do anything about it.
If the adrenal gland can’t work, your pituitary gland makes it work even harder. Those are compensatory mechanisms that can hide the effects of the fatigue.
Fibromyalgia is also problematic, in that if the patient complains more of pain than fatigue, then it’s not strictly a CFS, says Prof Mwantembe.
However, there is just as much stigma and ignorance attached to pain conditions.
Most doctors who think fibromyalgia is mostly in the mind "haven’t actually looked at the literature", he says.
It is another condition that has been around for centuries, and research points more towards a neurological etiology than in CFS — in this case nerves that are hyperactive, he says.
There are 18 pain points on the body, says Prof Mwantembe.
"If I press them and 11 or more are sensitive, then I will diagnose fibromyalgia rather than a true CFS.
Treatment will focus on pain. Activity and exercise also help, as patients who are in pain tend to be less active.
There are good books to read on the topic, among them From Fatigued to Fantastic by Dr Jacob Teitelbaum, a US expert on CFS.
Dr Teitelbaum is also author of The Fatigue and Fibromyalgia Solution: The Essential Guide to Overcoming Chronic Fatigue and Fibromyalgia, Made Easy!
On his website and in his books, Dr Teitelbaum says he knows CFS and fibromyalgia from the inside out, having contracted it as a medical student in the 1970s. He dropped out for a year to recover and in the ensuing years he has dedicated his career to finding effective treatment.
He believes that is best covered by what he calls Shine, an acronym that stands for sleep, hormones, immunity nutrition and exercise.
When it comes to any talk of prevention of a CFS condition, Prof Mwantembe says that isn’t possible unless you know the cause, or causes.
In the absence of that, and if there is no other clearly underlying condition or pathology to explain sustained fatigue, doctors should look for features that identify CFS — idiopathic or otherwise, he says
The take-home message is that CFS exists, and a multidisciplinary approach, including CBT and physiotherapy, is best to treat it, Prof Mwantembe says.
"That all helps to ensure that patients don’t end up going in circles," he says.