Chronic fatigue syndrome

For 13 years now I have suffered. I have lost my job that I loved, my financial independence, my social life, my friends, my ability to leave the house when I want to or do the things when I want to instead my body does the dictating now. Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis or ME, is a drastically debilitating disorder that has confused researchers for decades and is now finally becoming better understood. It is sometimes also referred to as post-viral fatigue syndrome when its onset is clearly preceded by a viral infection.

The condition involves profound fatigue, pain, sleeping troubles, "brain fog," and dizziness. Symptoms often worsen after any type of exertion, and someone with ME/CFS may be bedridden at times.

Its cause has been unknown for decades, and some have claimed it is psychosomatic, though newer research has begun pinpointing the physical issues. The lack of information and effective treatment has led some desperate patients to resort to pseudoscientific remedies.

Cause
Because doctors can’t name the illness, everyone—the patient's family, friends, health insurance, and in many cases the patient—comes to think of the patient as not really sick and not really suffering. What the patient comes to require in these circumstances, in the absence of help, are facts—tests and studies that show that they might “in fact” have something. While some researchers once believed ME/CFS to be psychosomatic, newer research has shown significant changes in body functioning.

The CDC has listed infections, immune system problems, excessive stress leading to body chemistry changes, cellular issues, and genetics as possible causes. Multiple factors may lead to ME/CFS.

Physical markers
As an immunologist, I once would have said (ME)CFS is clearly an immune dysfunction state, while an endocrinologist would have called attention to the adrenal gland irregularities, and a specialist in the autonomic nervous system would be convinced (ME)CFS is all about blood pressure abnormalities. Given what we’ve discovered about the illness, I now tell people (ME)CFS is all of these things.

Recent research is showing signs that there may be subtle physical factors in play that might have been overlooked in the past. Most notably, a 2017 study discovered that various types of white blood cells in CFS patients had significantly worse mitochondrial function than white blood cells from a control group, both in a resting state and while stressed. These mitochondrial defects cause the immune system to expend far more energy than it usually would, draining the patient's energy, especially after exertion. Unfortunately, mitochondrial diseases cannot be treated by current medicine and so CFS patients will likely remain afflicted for the near future.

There have been strides in the understanding the pathophysiology of the disease, with numerous studies suggesting that there are various biological abnormalities involving many organ systems in those with CFS as compared with controls, but that standard laboratory tests have not been updated to catch those differences. These findings suggest a physical and not a psychological origin for the CFS disorder, as evidenced by impaired cellular energy generation.

In 2019, Stanford scientists developed a blood test to identify ME/CFS.

A 2020 study found that patients with ME/CFS had cellular defense responses that fractured their mitochondria.

Early history
Reports of ME/CFS-like symptoms have occurred in earlier centuries.

In the 19th century, psychiatrist George Beard described an illness he called "neurasthenia," which he noticed was usually preceded by an infection and occurred mostly in women. The term "abortive poliomyelitis" was sometimes used in the early 20th century.

Possible outbreaks of ME/CFS have occurred from time to time, often preceded by people falling ill. The American ME/CFS Society lists dozens of likely outbreaks in the 20th century.

Claims of psychosomatic cause
But you also said that the way in which these syndromes finally go is when the word gets out that they are really "all in the mind" and not to be taken seriously.

Professor Simon Wessely has claimed that the ongoing symptoms of ME/CFS are a result of abnormal illness beliefs on the part of the patient, reinforced by such things as patient support groups, has been highly influential in shaping UK policy on the management of ME/CFS. He made similar comments on Gulf War syndrome. He found positive results treating ME/CFS with cognitive behavioral therapy (CBT) in 1997.

Extreme responses
Wessely and several other researchers were targeted by vitriolic and bizarre verbal abuse, harassment, and even physical violence. Wessely moved on from focusing on ME/CFS research some years ago but still, under police advice, has his mail X-rayed and takes other precautions against attack.

The One Click Group, the website of which no longer exists, strongly advocated for the view that ME/CFS is physical. It opposed the idea that CBT could cure ME/CFS (though it didn't protest the use of CBT to help people cope).

Harassment from members of One Click Group, supported by some eccentric input from Professor Malcolm Hooper and the Countess of Mar, resulted in other ME/CFS action groups making public statements distancing themselves from One Click. At least one person has been convicted of harassment and subject to a restraining order, curfew and tagging.

Resolution
Wessely's views have since been challenged by research showing significant biological issues in ME/CFS.

Treatment
Because the disorder is poorly understood, treatment options are limited and focused mainly on relieving symptoms. The CDC notes that coping with the disorder and the lack of treatment can be very difficult for a person with this illness.

While CBT was once considered to be a possible cure (before the disease's physical nature was better known), it can now be used to help patients cope and adjust to their profoundly upsetting new reality. "We like to think of CBT as 'emotional energy conservation,'" noted Dr. Alison C. Bested.

Pseudoscience
Having exhausted the limited options available to them in mainstream medicine, many patients look to alternative medicine for a solution. You name it and someone's claiming it "cures" ME/CFS. Acupuncture, neuro-linguistic programming, candida-control, herbs, homeopathy, diets and faith-healing are just a selection of the alternative therapies listed by one UK patient advocacy group — with a reminder that there's little proof to back up any of them.