5 Course

Some cases of CFS start gradually, but the majority start suddenly, often triggered by the flu or some other illness. People with CFS may get better after a few years or many years or may not get better at all. No one is sure whether anybody is truly cured or whether their illness has just subsided enough for them to live a more normal life.

5.1 Sudden onset

Most people with CFS report a sudden, drastic start to their illness. Sometimes people can remember a specific day or even hour when they first got sick.

Often, the illness starts with, or is triggered by, another illness. Many people report getting a case of the flu which slowly changes into CFS. Other people have had a case of Lyme disease which is treated fully, but the symptoms change from those of Lyme to those of CFS. Other triggers include car accidents, moves to a new home, and stressful life situations. Some patients say they felt unusual or uneasy for a short period (days or weeks) before the onset.

5.2 Gradual onset

The other cases have a very slow, gradual onset, sometimes spread over years. People with gradual onsets often don't realize there is anything wrong for years because it happens so slowly.

There is no standard course for CFS. Everyone diagnosed with CFS has had it for at least six months; they would not be diagnosed otherwise. It is possible that not all cases of CFS are chronic: some people may have CFS for four months and never get diagnosed. It's also possible that there are people who have CFS whose level of disability is so low they never get diagnosed.

People with CFS may get better after a few years or after many years, or never at all. They may reach a plateau at some constant level of health or may progressively decline. Often, the most prominent symptoms change over time or cycle through time. No one is sure whether anybody is truly cured or whether their illness has just subsided enough for them to live a more normal life. Relapses are common, especially after stressful life events.

5.3 Activity levels

Some people are more limited than others. The sickest are bedbound, while some people are self-reliant, and some are able to work or attend school. Some people with CFS can push themselves to do extraordinary things but feel much worse afterward. One notable CFS sufferer is soccer legend Michelle Akers, who reported struggling with the illness for much of the later years of her career. However, extreme sufferers like those confined to bed felt that an active professional athlete "poster child" like Akers only helped to trivialize the syndrome in the eyes of the public (the infamous "Michelle Akers has it and she plays soccer, so why are you complaining?" reaction), and thereby made it much more difficult for those who are highly incapacitated to be taken seriously.

5.4 Payback effect

One of the most common and recognizable aspects of CFS is what is called "post-exertional malaise," or, more colloquially, the "Payback Effect." When people with CFS exert themselves, their symptoms get worse afterward. Exertion could be physical or mental exercise, doing routine tasks, such as driving, cleaning, or eating, or handling a stressful situation. The harder the exertion and the longer it lasts, the worse the symptoms will be afterward. The payback effect leads to a few typical patterns, sometimes called "The Yo-Yo Pattern" and "The Downward Spiral."

5.5 The Yo-Yo pattern

The Yo-Yo Pattern happens when people work very hard at some activity, but only on good days. This leads to worse symptoms which prevents them from working for the next few days. When they feel better, they work extra hard to make up for the bad days--or just because they're so excited to feel good, but this leads to them feeling bad again...

5.6 The downward spiral

The Downward Spiral happens whenever feeling bad puts a patient in a situation that makes them feel worse. This is similar to the yo-yo, but in the downward spriral, people don't have time to recover on bad days. Here are some examples:

• A person works very hard one day at work. This makes them feel worse, which leads to them not working as effectively. In order to catch up, they work harder, which leads to them feeling worse...
• A person loses their appetite when they don't sleep well because they're so tired, they don't realize they're hungry. Then, they don't sleep well at night because they wake up very hungry...
• A person does not feel well, and therefore cancels a date with a friend. This leads to them feeling depressed and sleeping poorly, which leads to them cancelling more dates...

5.7 Duration

These patterns can happen over days, weeks, or longer periods. They can happen together (over different periods of time) or alone.

6 Diagnosis

Diagnosing CFS is very difficult. There is no conclusive test for CFS, so doctors must rely on their experience and intuition. Once a doctor suspects CFS in a patient who meets the general diagnostic criteria, the doctor must successively eliminate all other potential testable causes of their set of symptoms. CFS, therefore, is what is called an exclusionary diagnosis.

Historically, many doctors have been unfamiliar with CFS, and some have refused to diagnose it. This situation is rapidly changing, with more doctors willing to diagnose it and more diagnoses each year. In the UK, the Chief Medical Officer's report stated that all doctors should consider CFS as a serious chronic illness and treat patients accordingly. Unfortunately there appears to be considerable skepticism amongst doctors about the existence of CFS, which has led to frustration in some patients, who feel strongly that their disability is not psychological in origin but has a biochemical substrate. Some more vocal patients' groups maintain that research into CFS (ME) in the UK has been mostly hijacked by the psychologists/psychiatric lobby, who they claim hold significant power within the medical fraternity, with a resultant "abuse of patients' rights".

7 Epidemiology

Because there is no definitive test to identify CFS — or even agreement about what CFS is — estimates of its prevalence vary widely. Studies in the United States have found between 75 and 420 cases of CFS for every 100,000 adults.

Far more women than men get CFS — between 60 and 85% of cases are women. Minorities and low income people are slightly more likely to have CFS. Though people of all ages can get CFS, and precise statistics are not available, the prevalence among children and adolescents appears to be lower than for adults. Among minors with CFS, about half are boys and half girls.

CFS occurs both in isolated cases and large-scale outbreaks. Blood relatives of people who have CFS are more likely to get it.

8 Disease associations

There are some illnesses so similar to CFS that it is hard to distinguish between them. People with fibromyalgia have muscle pain and sleep disturbances. Those with multiple chemical sensitivities (MCS) are sensitive to chemicals and have sleep disturbances. Many veterans with Gulf War syndrome (GWI) have symptoms almost identical to CFS. Post-polio syndrome also bears remarkable resemblance to CFS.

Other disorders with known causes and treatments that may produce CFS-like symptoms are Lyme disease, gluten intolerance ( Celiac disease and related disorders), and vitamin B12 deficiency.

9 Etiology

The cause of CFS is unknown, although a large number of causes have been proposed, and several proposed causes have very vocal and partisan advocates. Among proposed causes:

• infectious agents: This includes several viruses, Lyme and related bacteria, mycoplasma, and yeast and other fungi.
• toxic agents: Mercury, particularly from dental amalgams and vaccines, various organic solvents , herbicides, and several other chemical compounds are often named. The artificial sweetener aspartame is also often blamed.
• immune dysfunction: Both autoimmune disorders (representing a hyperactive immune system) and immunodeficiency (representing an underactive one) have been suggested.
• hormonal dysfunction: Thyroid disorders can cause CFS-like symptoms, as can several other known endocrine disorders. It's possible that disruption of the hormonal "master control" in the hypothalamus somehow causes CFS by upsetting the body's hormone balance.
• dysautonomia: Dysautonomia is the disruption of the function of the autonomic nervous system (ANS). The ANS is tightly tied to the body's endocrine system and also directly controls some aspects of blood pressure control and metabolism.
• Chiari malformation and other spinal problems: Arnold-Chiari malformation is constriction where the cerebellum meets the spinal cord. This area can become constricted due to a portion of the cerebellum sagging too low or problems with the bone structure of the lower skull or upper spinal column. The constriction can impede the flow of cerebrospinal fluid between brain and spinal column, and can also compress some nerves in the area. This may cause paralysis or hydrocephalus in extreme cases, but this or other spinal problems may cause autonomic nervous system problems in less severe cases.
• metabolic disorders: Metabolic disorder s such as McArdle's disease , CPT II deficiency , myoadenylate deaminase deficiency, and mitochondrial disorder can cause symptoms that strongly resemble CFS.
• nutritional deficiency/imbalance: Certain dietary practices, particularly the consumption of large amounts of carbohydrates, are sometimes blamed for CFS. Celiac disease or gluten intolerance is known to cause CFS-like symptoms in some individuals, as is vitamin B12 deficiency. Other forms of food allergies are also often blamed, especially in cases of Leaky Gut Syndrome.
• malnutrition: In some cases, simple malnutrition may be responsible for CFS (or CFS-like symptoms, if you prefer). Particularly highly restrictive vegetarian diets could cause problems, even though they appear sufficient from the standpoint of calories and essential vitamins and amino acids. Most people cannot manufacture the entire amounts of ribose, carnitine, CoQ10, fatty acids, and several other "semi-essential" nutrients that are critical for cellular metabolism and for nervous system health. A diet deficient in these can lead to a form of malnutrition that results in the classical CFS symptoms.
• depression: Though likely many cases of CFS are erroneously blamed on depression, there is no doubt that severe depression can cause most of the symptoms of CFS, and thus it should not be discounted as a possible cause in some cases.
• food additives: Some argue that wheat and dairy derived opioid peptides used as flavor enhancers in most junk food is the cause of this disorder. Chemically modified opioid peptides are an effective tool in increasing sales due to their addictive nature, but like all opioid drugs cause fatigue, respiratory suppression, and constipation. The incidents of CFS have increased at a similar rate when compared to asthma cases, as well as laxative use per capita. As of yet, no study has been performed which attempts to treat CFS patients with opioid antagonist drugs like naltrexone.
• dental infections : Some have implicated focal infections from root canals and cavitations in tooth sockets where the periodontal ligament was not removed when a tooth was extracted. The theory is that anaerobic bacteria can exist inside a tooth with a root canal or a cavitation because of the lack of blood supply. The bacteria produce toxins that cause system wide problems. Some individuals with CFS like symptoms have seen great improvement after the removal of all root canals and/or cavitation surgery to clean out the sockets from tooth extraction sites.

In all likelihood it will turn out that CFS is not a single disease but several, and that for many of these several factors are involved in the development of the disease.

10 Treatment

The treatments that are proposed and often attempted for CFS are as varied as the suggested causes, and can generally be classified according to the specific cause that they presume. Unfortunately, since CFS symptoms tend to vary over time and will usually get gradually better once the initial crisis is past, it is very easy for someone to become convinced that a particular treatment has helped them (or not), regardless of its true effectiveness.

• legal advice, economic councelling: The stress of unresolved legal issues, overdue payments, bureaucratic antagonism, and the like, is a burden to all of us. Usually, though, we can cope and get on with life. Not so with a ME/ CFS sufferer. The stress of economic and legal problems can cause a serious deterioration and paralysis of the patient. It's no use to attempt any treatment at all until such issues are resolved. An understanding social worker or lawyer can make wonders helping to get rid of all those trifles, paving the way to specific treatment attempts.
• hyperthermia: Far-Infrared Sauna seems to help many PWC (Patients with CFS). [1]
• antibiotics: Antibiotics are commonly used to treat Lyme disease and mycoplasma infections. Both of these infections can be hard to eradicate, so often when an antibiotic cure fails it is claimed that the duration of treatment was insufficient or the wrong antibiotic was used.

Another view is that some antibiotics have specific immuno-modulating side effects, quite separately from their antibiotic action. In the MedLine database, ciprofloxacine, doxycycline and the penicillines are reported to be of significant (albeit temporary) effect in some patients. It's worth noticing that an even group of patients may have adverse effects, and a third group no effect.

• antifungals: Antifungal drugs are used to treat yeast and fungus infections. Proponents of the yeast hypothesis for CFS claim, however, that the drugs are largely useless unless combined with a low-carbohydrate diet that effectively "starves" the fungus at the same time.
• immune enhancers: These are generally "food supplements" of various types that are claimed to enhance the immune system, although they can include various antiviral drugs. They are often proposed either to treat some presumed viral infection or to treat a presumed general immune deficiency.
• detoxifiers: Various detoxification agents are often advocated, from simple intestinal purgatives to " liver cleanses" to various types of chelating agents for the removal of mercury and other heavy metals.
• hormones: Various hormones have been tried from time to time, including specifically steroids( cortisol) and thyroid hormones. Though steriods may produce some short-term pain relief, they have not been shown to be of any general benefit. Thyroid hormones occasionally are effective for certain people who may either have a thyroid hormone deficiency or lack an enzyme that allows them to effectively use thyroid hormones.
• antidepressants: Antidepressants are often given to CFS patients, for a number of reasons:
  • On the asumption that the illness is caused by depression
  • Because the illness often causes depression, and the patient may experience some overall improvement if this symptom is treated
  • Because tricyclic antidepressants often give pain relief without resorting to stronger pain killers such as codeine.
  • Because tricyclic antidepressants can help correct a drifting sleeping pattern.
  • Because sometimes certain antidepressants appear to help CFS symptoms, even when depression isn't present
  • To be doing something
• sleep aids: Sleep aids are often given to CFS patients, either on the assumption that lack of restful sleep is causing the CFS symptoms, or because CFS disrupts restful sleep.
• pain relievers: Many CFS patients experience significant amounts of pain, and various narcotic and non-narcotic pain relievers are often given for symptomatic relief.
• mito cocktail: Given that the symptoms of CFS generally resemble those of metabolic disorders, a combination of supplements often known as a mito cocktail is sometimes used to treat the disorder. This "cocktail" consists of relatively large amounts of l- carnitine and CoQ10, and possibly d- ribose, vitamin B12, biotin, and several other nutrients. As with mitochondrial disorder, it is believed that large amounts (eg, 2-10g/day l-carnitine) are necessary to have a significant effect, and smaller amounts of these nutrients will not generally be helpful.
• surgery: For Chiari malformation and some other disorders (eg, thoracic outlet syndrome) that are occasionally blamed for CFS symptoms, surgery to release trapped nerves or otherwise correct neurological problems may be helpful.
• location: The medical community has not investigated this theory, but it seems that many people with CFS are very healthy when in certain locations, such as the Caribbean. [2]
• dental cleanup: Some individuals suffering from CFS have reported a major reduction of symptoms and improvement in health after the removal of teeth with root canals. Cavitation surgery to clean up the sockets of sites where the periodontal ligament was not removed after a tooth extraction has also been helpful to some.
• graded exercise: A monitored 'self-developed' gradual exercise program to increase strength and cardiovascular health has proven helpful to some patients. However, the risks of post-exertional malaise, which can cause significant, if usually temporary, worsening of symptoms, make this a difficult regimen to implement successfully. Some studies which have suggested that graded exercise can improve the condition of sufferers have been criticized for ignoring individuals who fall out of the trials because they can't cope with the exercise program required. Indeed, in the UK, rigid enforcement of GE by medical professionals on people seriously ill with CFS has led to many becoming much more ill.
• self-controlled exercise, "pacing": although accepting the above conclusions about 'graded exercise,' some exercise, however, is absolutely necessary in order to make any progress at all. "Pacing" is being advocated by a large number of patients as one of the few really effective means of improvement. The principles are: 1. Accept your limitations. 2. "Listen" to the first body signals of fatigue, and stop any exercise before becoming noticeably tired. Rule of thumb: dont exert more than 70% of your capacity. 3. rest. Shift between limited exercise/ rest, etc. "Body signals of fatigue" are individual. An understanding nurse, doctor or therapist may be of help.
• cognitive behavioural therapy: Cognitive therapy may benefit up to 25% of sufferers. This does not imply that CFS is a primary psychiatric condition, but rather that the protracted course of the illness may cause depression, anxiety and misinterpretations. In addition, CBT may teach patients various "coping strategies" to help them deal with cognitive impairments such as a deterioration of short-term memory or abbreviated attention span. As with graded exercise, above, there exists a danger of inappropriate treatment when applied by a practitioner unfamiliar with the specific needs of CFS patients; since CBT and graded exercise are the only enforced treatment for CFS by the medical profession in the UK, such mistreatments are, unfortunately, far too common.

As there is no one identifiable cause or falsifiable diagnosis for CFS, there is also no one treatment protocol or "magic bullet". Due to the multi-systemic nature of the illness, and others like it, an emerging branch of medical science called psychoneuroimmunology is looking into how all the various theories fit together. Hopefully, a comprehensive treatment protocol will emerge as well.

11 Notable sufferers

Some notable sufferers of CFS are:

• Michelle Akers, soccer player
• Brian Aldiss, author
• The Duchess of Kent
• Blake Edwards, writer and director of such movies as Breakfast at Tiffany's, 10, and The Pink Panther
• Clare Francis , international yachtswoman and author
• Laura Hillenbrand, author of the book
• Kelly Holmes, athlete
• Alistair Lynch, Australian footballer
• Keith Jarrett, an important jazz pianist
• Barry Sheen , motorcyclist

12 External links

• Centers for Disease Control CFS Page
• The National Institutes of Health CFS Page
• The CFIDS Association of America (patient advocacy group)
• Long list of proposed causes and/or cures for CFS and non-CFS chronic fatigue
• Documentary film about the disease

Diseases

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