The disease of “a thousand names” …

Every century has had a name for it.
Thomas Sydenham, in the 17th century, called it Muscular Rheumatism; in the 18th century, a new name emerged, Febricula, coined by Sir Richard Manningham; and in the 19th century, a more “medical” name was developed of Neuromyasthenia.

In our century, each decade has had a name – M.E. (Myalgic Encephalomyelitis) of the 60s and 70s; Yuppie Flu of the 80s; closely followed by the more “academic” Fibromyalgia in the 2000s.

So, what is this “disease of a thousand names”? Chronic Fatigue Syndrome (CFS) is a complex conglomerate of symptoms which together forms the clinical whole. It can mimic various other diseases such as: Lupus, Multiple Sclerosis, Anaemia, Diabetes, IBS, Thyroid disease, Rheumatoid Arthritis or Rheumatic Polymyalgia. Its onset can be at any age and episodes can be short-lived and intermittent, or chronically persistent, ultimately wearing the patient down with its seemingly unending course.

The original term M.E. came into use following an outbreak of a possible viral infection in the London Royal Free Hospital in 1955. A case description published in the Lancet magazine based the name on the combination of symptoms: “… muscle pain (myalgia) and effects on the brain (encephalo), spinal cord (myel), and inflammation (itis) …”.

It was only then, in 1988, following a similar outbreak in the USA that the Centre for Disease Control (CDC) changed the name to CFS.

As there are no specific blood tests or scanning examination to make a definitive diagnosis, the rather non-specific symptoms of fatigue, cognitive impairment or “brain fog”, poor sleeping patterns, post-exertional malaise often associated also with muscle and joint pains, have often been trivialized and dismissed by many health professionals as pure malingering.

More often than not, patients are told that they are simply depressed, put on medication and discharged from regular care. There may very well be an element of depression and feelings of hopelessness and anxiety associated with CFS, but this is predominantly a result of the relentless nature of this disease rather than a cause thereof.

The cause of CFS has been investigated by many researchers and there is still no consensus on this matter. Most recently, the theory of a post-viral chronic inflammation of the nervous system has been proposed and, to some extent, proven. The most commonly associated viruses have been from the Enterovirus species (a flu-like illness with mild upper respiratory symptoms, fever, sometimes rash and gastro-intestinal upset) as well as the Human Herpesvirus species (this includes Epstein-Barr and Cytomegalo viruses, the causative agents on mononucleosis or glandular fever).

Interestingly, both virus species have a particular affinity for infecting the central nervous system of the human body, with the most notoriously infamous of the enteroviruses being Polio. Luckily, polio has been almost eradicated from the world through regular inoculations, but no such programme exists for the other less deadly variants.

COVID has also been implicated in causing CFS. Currently termed as long-COVID (i.e. symptoms lasting well over six months after initial infection), many patients experience pretty debilitating neuro-muscular as well as respiratory, cardiac and even gastro-intestinal symptoms.

Treatment of CFS has been just as difficult.
Without a specific causative agent, and difficulty determining the actual patho-physiological pathway causing the symptoms, treatments have been generally based on simply trying to alleviate each specific complaint. However, as research has shown that the most common driving factor of ongoing symptoms has been some form of chronic inflammation, the focus has been on finding medications which best control this.

Steroids and neuro-muscular pain moderators have a definite place in the treatment regime, but more and more clinicians are also resorting to slightly more off-label medications (such as low-dose naltrexone), which some studies appear to prove could have a valuable anti-inflammatory action on specifically the nervous system. Certain anti-depressants also have a similar effect, especially when used in very low/sub-therapeutic doses.

Of course, other non-medical therapies cannot be discarded and can be an extremely effective adjuvant to the mainstream medical therapies. Acupuncture and Traditional Chinese Medicine, Homeopathy, and Cognitive Behavioural Therapy can all play a significant role in managing and controlling this most unfortunately-often-incurable disease.

But, most importantly, I cannot stress the importance of just listening to your own body, learning its rhythms, its strengths and weaknesses to better understand and judge what pace of working and living best suits it. And how to find a “thousand cures” for the disease of a “thousand names”.

By Dr Jo
2nd December 2023