M.E or CFS ? : Clearing up the Confusion
"The belief that [ME] CFS is a psychological illness
is the error of our time."-Dr. Byron Hyde-
"…now there’s proof that inflammation occurs in the brain and there’s evidence that patients with this illness experience a level of disability that’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, or patients with multiple sclerosis."
"Where the one essential characteristic of M.E. is acquired CNS[central nervous system] dysfunction,
that of CFS is primarily chronic fatigue."
Dr. Byron Hyde of the Nightingale Research Foundation makes the above very simple yet profound statement in his essay, The Complexities of Diagnosis (Chapter 3 inHandbook of Chronic Fatigue Syndrome). While just about all patients with M.E. will fit the definition for CFS, not all of those with CFS will fit the definition for M.E. (But technically, the CDC CFS definition excludes those patients with other serious illnesses that include fatigue as a symptom. Therefore a patient formally diagnosed with M.E., a serious neurological illness of CNS dysfunction – debilitating fatigue being merely one of MANY disabling symptoms – would be ruled out of the CFS definition. See Dr. Hyde’s comment in sidebar.) If a patient does not fit the definition for M.E. and is given a diagnosis of CFS without further investigation into the cause of the symptoms, it would be tragic if a treatable illness was missed. And this has happened on numerous occasions (see below for examples). For a more complete understanding, see the Definitions pages, where the various definitions list diagnostic requirements.
ME and CFS are described by some as a "medically unexplained" illness with no biomarkers. Do not accept this; it is far from the truth. The research cited on our Research pages and other websites, as well as specialized and more in-depth testing as suggested in the Consensus Document (listed on the Test Abnormalities page of this website) and in the Nightingale Definition explain many of the symptoms ME and CFS-labeled patients suffer – tests that, when interpreted together, can give the patient and doctor a more complete picture of what’s going on in patients’ bodies. It may also help differentiate whether the patient has M.E., or chronic fatigue arising from some other serious illness that may be treatable.
Descriptions are as individual as the patient
There are as many descriptions of this disease as there are patients, because symptom prominence varies from patient to patient. But they all will have a common theme: crushing exhaustion that never goes away, no matter how much you rest; that the simplest things most people take for granted physically and mentally now seem like insurmountable tasks. For example, taking out the trash has become like a march up a mountain, or deciding what you need at the grocery store makes your brain swirl like a page-long physics equation. And once you have tackled one or two of those chores, you feel an overwhelming compulsion to lie down and rest, even though you know it will do little good. And usually there is widespread muscle pain that seems to radiate right out of the spine and into the muscles throughout some or all parts of the body. A severe hangover that never goes away, that varies in intensity day-to-day, even hour-to-hour, is how ME and CFS are often described, or "the flu that never goes away," year after year. Add to that many of the symptoms on the Symptoms List of this website – some coming and going or waxing and waning, others ever-present, always aggravated by tasks you used to give barely a passing thought to – and you have a person in a state of debility that has been compared by researchers and clinicians to MS, cancer and AIDS.
Many scientists would describe ME or CFS in less personal, more technical terms. Words like "post-exertional malaise" and "neurocognitive impairment" sound fairly important, but simply do not convey what the patient is really experiencing. But the clinicians and researchers who have collectively worked with thousands of ME and CFS-labeled patients know that, "There is no word in the the English lexicon that describes the lack of stamina, the paucity of energy, the absolute malaise and turpitude that accompanies this illness." (-Dr. Charles Lapp-)
Then what’s the difference between M.E. and CFS?
M.E. experts from the U.K., U.S., Canada, Australia and many other countries who have studied this disease have stated that it’s the definitions that determine the diagnosis. The current Consensus Document and most M.E. definitions (Ramsay,Dowsett and historic) require the major criteria of severe muscle fatigue following minimal exertion with prolonged recovery time, and neurological disturbances, especially autonomic, cognitive and sensory functions, and variable involvement ofcardiac and other systems, with a prolonged relapsing course. This is a very specific list of criteria, and a major point to note is that the CNS (central nervous system) dysfunction of M.E. can be measured. (See below.)
Alternately, CFS definitions present the major criterion of fatigue that lasts 6 months and reduces the level of function by at least 50%. Post-exertional malaise and neurological abnormalities are considered minor and optional criteria. So this broad definition could encompass any of many illnesses in which fatigue plays a role. Fatigue is not only a symptom of numerous illnesses, but it is something experienced by normal, healthy people. And there are no reliable objective ways to measure fatigue.
