CFS/ME and fibromyalgia

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a debilitating neurological illness, which can affect multiple organ systems. It should not be confused with chronic (idiopathic) fatigue, as CFS/ME is much more than just "fatigue." A subset of patients is able to work, but some are too weak to move or even speak and have to be tube-fed - not exactly what the word "fatigue" is associated with. This is very different from "tiredness" or "burnout."

Post-exertional malaise is an important part of CFS/ME and can last for days, weeks or even months after exertion. Patients suffer cognitive and neurological problems and other symptoms, which can include dizziness, tremor, nausea, cardiac problems, IBS (irritable bowel syndrome), bladder problems, swollen lymph nodes, chronic or intermittent fever, increased suspectibility to infections, vision disturbances, allergies and hair loss. Severe chronic pain is very common.

In the United States the name CFS is more commonly used, even though it has only been used since 1988 and many doctors and patients feel it downplays the severity and complexity of the illness. In the United Kingdom and some other European countries the illness is referred to as "ME", for myalgic encephalomyelitis (literally "inflammation of the brain and the spinal cord causing muscle pain"), a name that has been in use since the 1950s. There is no clear consensus whether CFS and ME are the same thing, but WHO's diagnostic manual ICD-10 classifies them both under the neurological diagnostic code G93.3.

Multiple epidemics of the illness have occurred between the 1930s and present, in countries such as Iceland, Switzerland, the United States, the United Kingdom and Australia. Most have been associated with hospitals. The most famous epidemic took place in the Lake Tahoe area, Nevada in 1984. Fatalities have been associated with the epidemics, but the first time the public became aware that CFS/ME can kill was in 2006, after the coroners' examination declared that the young British woman Sophia Mirza died of CFS/ME.

CFS/ME is thought to be more common in women, but it can affect anyone, even young children. The estimated prevalence is thought to be between 0.5 and 1%, making it more common than multiple sclerosis and about as common as rheumatoid arthritis. Several viruses, including retroviruses (most recently XMRV/MLV), herpesviruses and enteroviruses, have been connected with the illness. Genetic vulnerability and chemical exposure may also play a part. Complete recovery is thought to be rare.

"We've documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease."

Dr. William Reeves of CDC about CFS/ME in a press conference held on Nov 3, 2006. (source)

Fibromyalgia is a chronic pain disorder characterized by widespread pain and so called tender points, painful areas in certain parts of the body. 11 such tender points are required for diagnosis. In addition the pain must be present in both sides of the body, above and below the waist and the axial skeleton (such as the spine).

Besides muscle and joint pain there are often headaches, chest pain and facial pain. Allodynia or heightened pain sensitivity means that even gentle touch can feel immensely painful. There are usually other symptoms as well, such as fatigue, sleep disturbances, paresthesias (abnormal sensations), morning stiffness, cognitive problems, depression and anxiety. Migraines, restless legs and irritable bowel are common.

There are thought to be several subgroups of fibromyalgia: primary/idiopathic (no known cause), secondary (in the presence of autoimmune illnesses) and post-traumatic (caused by injury or other physical trauma). Fibromyalgia is frequently associated with some autoimmune diseases, such as rheumatoid arthritis and systemic lupus erythematosus (SLE). It often occurs together with CFS/ME.

Fibromyalgia is staggeringly common: its prevalence is thought to be as high as 5-10% of the population. This makes it one of the most common chronic conditions, and the second most common chronic pain disorder after osteoarthritis. Like CFS/ME it is primarily affects women, but anyone can get it, including children. It is usually a life-long condition, but recovery may be more likely than in CFS/ME.

Fibromyalgia has been treated as a rheumatological condition, but most doctors now believe it is neurological in origin. Some pathological changes suggestive of inflammation have been found in the skin and muscle of patients, but they may originate from neurological dysfunction. Other proposed origins include infectious agents, autoimmunity, hormonal deficiencies such as hypothyroidism, vitamin D deficiency and growth hormone deficiency.

FDA has approved three medications for the treatment of fibromyalgia: the anticonvulsant Lyrica (pregabalin) and the SNRI antidepressants Cymbalta (duloxetine) and Savella (milnacipran). Several other medications are in late-stage studies. There are no medications officially indicated for the treatment of CFS/ME, but Ampligen (poly I:poly C12U), an immunomodulatory/antiviral mismatched RNA drug which is administered intravenously, is pending FDA approval.

Both of these illnesses receive negligible research funding. For example, for 2008 the U.S. National Institutes of Health has allocated 8 million dollars for fibromyalgia and only 4 million dollars for CFS/ME research, while Cooley's anemia gets 34 million, cystic fibrosis 81 million and lupus 84 million. (source).

If you are interested in some concrete examples of what having CFS/ME is like, there are four interviews of CFS/ME sufferers on Maija Haavisto's personal website:

The flu that didn't go away 20-year old Jat who has been sick since his childhood and has two other family members with CFS/ME
Abnormal but unspecific 25-year old Riikka has severe CFS/ME and is dependent on other people
Wash it away Katja, a mother of three, got very ill from mold exposure, but was told she had postnatal depression
Mind games For years 21-year old Anna tried to convince herself she was just lazy and tried to maintain her sporty lifestyle