Kryptonite for Millions

Kryptonite was a term coined by DC Comics for their “Superman” cartoon series in the 1940’s. A mineral from the planet Krypton that drained Superman of his powers. Exposure to this powerful substance incapacitated Superman’s physical abilities rendering him completely helpless.

This is what CFS feels like. Chronic Fatigue Syndrome (aka “Myalgic Encephalomyelitis”) can completely disable an otherwise healthy person. Unfortunately, there is no known single reason, no one sure ‘substance’ that causes it. Sadly, there is also no FDA-approved pharmaceutical, nor one standard, universally accepted, treatment option that helps everyone equally.

Perspective is key to understanding…’Chronic Fatigue’ is NOT “Chronic Fatigue Syndrome”.

Lots of people have experienced chronic fatigue:

• Military personnel enduring the pain, overexertion, sleep deprivation, and tremendous stresses of a specialized military training program.
• Medical students abiding an extended period of repeated double + triple shifts during an internship
• Cancer patients sustaining chemical or radiation therapy for treatment of a deadly malignancy
• Sleepless new parents and countless other examples

What do all these people’s valid experience of ‘Chronic Fatigue’ have in common?

1) There IS a known cause for the exhaustion

2) They can expect to recover, in time, after sufficient rest and recuperation

Person’s with CFS (PWC’s) experience:

Endless, completely debilitating, multi-system exhaustion at the cellular level, with no known reason, and no known ‘cure’. Think of the worst flu you’ve ever had, then imagine you’ve just completed a 26 mile marathon, up hill, all the way… now imagine that no matter what you do, no matter how much you rest, your body NEVER seems to recover back to its previous functional level.

Sleep is un-restorative. The body can do nothing but sleep most of the time, however, no amount of sleep restores the body’s abilities to function ‘normally’ (or at least function as it once did). Symptoms vary in intensity and duration between patients, and within a patient from any given time to the next. ANY amount of exertion tends to exacerbate the severity and duration of disabling symptoms, making the disease even more difficult to treat.

The body, at the cellular level cannot tell the difference between physical, mental, emotional, or other types of exertion. Any activity (work, play, fun, or not) that stresses the body tends to make, or keep, the person sick. Lifestyle adjustments are required. Some people do ‘recover’ to a “normal” healthy level of daily functionality. Most remain impaired to varying degrees of disability, although symptoms may wax and wane throughout the course of a day, week, month, or even years.

Many Millions of people around the world have been stricken with this ‘forgotten plague’ and have simply ‘gone missing’ from their lives. Not just adult men and women, but children as well.

The cost to society is in the many Billions of dollars. Not only in Healthcare expenses, and disability payments, but in the ‘opportunity cost’ of so much crippled human potential.

Dollars, laid end to end at the equator, could wrap around the earth several times

Campaigns to raise public awareness of this, and other “invisible” chronic illnesses, have thus far not translated into the funding and political will to adequately address the threat. Apparently, there is not yet enough monetary ‘incentive’ for disease-care giants to focus on it. Yet grass-roots efforts continue.

Not all people suffering this unforeseen challenge are victims. Quite the opposite. Statistics show most PWC’s, prior to diagnosis, were extremely successful people living productive lives. Illness has transformed them into warriors at a different level.

Unlike many other debilitating chronic illnesses, CFS is “invisible”. Beyond appearing exhausted, disoriented, and immobile, symptoms remain largely unverifiable by medical testing. There is a natural tendency to doubt the patient who reports of CFS symptomology without being able to objectively measure those symptoms.

Consequently, there is a lack of understanding, and therefore acceptance, among the professional medical establishment of the demonstrability of CFS. Even the name, “chronic fatigue syndrome” is misleading. That’s like calling Diabetes: ‘chronic sugar disorder’. One can see how much tougher it would be to take seriously. Advice from family+friends like “eat less candy” or “go on a diet” come to mind… well meaning perhaps, but not very helpful.

The name sets a lesser expectation… therefore it may be dismissed or assumed to be psychological in nature. Physical symptoms become diminished in the eyes of credible M.D.’s. Patients are often misdiagnosed with depression, hypochondriasis, or even malingering. Jobs are lost, careers disintegrate, benefits are denied, income evaporates, houses foreclose, families break apart, and lives can ultimately be lost through neglect, over-medication, despair, and suicide.

There have been several attempts to rename the illness (CFIDS, SEIDS, etc.). Myalgic Encephalomyelitis (ME) is often used interchangeably with CFS, because the overlapping symptomology makes them so similar, although they actually have slightly different diagnostic criteria. The term ‘ME’ is used mainly internationally while ‘CFS’ is more common in the United States. Whatever it is called, more and more health practitioners are becoming educated in its diagnosis, treatment, and prognosis. There are things we can do. There is hope.

This blog-post is not meant to be an extensive essay on this very complex topic, just a cursory overview in honor of May 12, the international CFS/ME awareness day. For a better understanding, check out this excellent recent video production: