spears of barbed wire,and lead-boots.

What is Fibromyalgia (FM)?

FMS (fibromyalgia (fi-bro-my-Al-juh) syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the fibrous tissues in the body.

The pain comes from the connective tissues, such as the muscles, tendons, and ligaments. FMS does not involve the joints, as does rheumatoid arthritis and osteoarthritis.

Most patients with fibromyalgia say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with fibromyalgia, but it shows up in people of all ages.

Increased recognition of FM in both primary care and rheumatology clinics has skyrocketed since the publication of the ACR’s FM classification criteria in 1990. Medline references for FM soared and so did NIH funding as evidenced by the number of projects involving FM. From 1975 to 1990, there were only 17 projects. From 1992 to the present, there have been 500 projects involving FM. Diagnostic criteria also set the stage for epidemiological studies, demonstrating that FM in the general population has a prevalence ranging from 1.3 to 7.3 percent.

FM carries an annual direct cost of care over $20 billion. People with FM account for a large proportion of rheumatology outpatient visits and FM is the second or third most common diagnosis made by British rheumatologists. In a cross-sectional mail survey of Canadian rheumatologists, FM was listed as one of the three most common diagnoses among their patients. In an Israeli internal medicine ward, 15 percent of the inpatients were found to have FM and FM in hospital patients could be more common than reported findings.

Musculoskeletal pain and fatigue experienced by fibromyalgia syndrome patients is a chronic problem, which tends to have a waxing and waning intensity. There is currently no generally accepted cure for this condition According to recent research; most patients can expect to have this problem lifelong. However, worthwhile improvement may be obtained with appropriate treatment, as will be discussed later. There is often concern on the part of patients, and sometimes physicians, that FMS is the early phase of some more severe disease, such as multiple sclerosis, systemic lupus erythematosus, etc. Long-term follow up of fibromyalgia patients has shown that it is very unusual for them to develop another rheumatic disease or neurological condition. However, it is quite common for patients with "well established" rheumatic diseases, such as rheumatoid arthritis, systemic lupus and Sjogren's syndrome to also have fibromyalgia.

It is important for their doctor to realize they have such a combination of problems, as specific therapy for rheumatoid arthritis and lupus, etc. does not have any effect on FMS symptoms. Patients with fibromyalgia syndrome do not become crippled with the condition, nor is there any evidence it effects the duration of their expected life span. Nevertheless, due to varying levels of pain and fatigue, there is an inevitable contraction of social, vocational activities which leads to a reduced quality of life. As with many chronic diseases, the extent to which patients succumb to the various effects of pain and fatigue are dependent upon numerous factors, in particular their psycho-social support, financial status, childhood experiences, sense of humour and determination to push on.

Doctors who left medical school before 1990 may not be familiar with fibromyalgia. That is because the disease was only given its name then by the American College of Rheumatology. So a doctor aged under 40 years of age may understand your condition better than an older practitioner. Physicians who aren't familiar with FMS may do extensive testing to determine what is wrong. This creates frustration and seldom yields a diagnosis because, at this time, there are no routine blood tests or X-rays that show abnormalities in FMS.

However, FMS can be diagnosed with some certainty by informed physicians who will look for a history of chronic symptoms of at least three months' duration along with reports of pain in all four quadrants of the body.

Physicians will also perform a simple physical exam of the 18 specific points.

The American Rheumatology Society has been instrumental in defining the diagnostic criteria for fibromyalgia. They deem it to be present when at least 11 of the 18 points are tender or painful to pressure. While physicians specializing in Rheumatology or Physical Medicine have often diagnosed and treated FMS, many GPs are also knowledgeable about this syndrome. The best physician for you will be one who works with you to find the most helpful treatments.

Patients can find themselves unable to work in their chosen professions and may have difficulty performing everyday tasks. As a consequence of muscle pain, many FMS patients severely limit their activities including exercise routines. This results in their becoming physically unfit - which eventually makes their fibromyalgia syndrome symptoms worse.

SYMPTOMS AND ASSOCIATED SYNDROMES

Pain - The pain of fibromyalgia has no boundaries. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively. People with FMS suffer chronic widespread pain, which can be described as burning,
throbbing, shooting, or stabbing, Painful areas often include the upper back, shoulders, neck, the low back, and other areas around the joints. Many people will say, "I hurt all over."

Fatigue - This symptom can be mild in some patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating. Most people with FMS complain of fatigue. It can be profound, interfering with all daily activities.

Sleep disorder - Most fibromyalgia patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that fibromyalgia syndrome patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity.). The sleep pattern for clinically depressed patients is distinctly different from that found in FMS or CFS.

Irritable Bowel Syndrome - Constipation, diarrhoea, frequent abdominal pain, abdominal gas and nausea represents symptoms frequently found in roughly 40% to 70% of fibromyalgia patients.

Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 50% of fibromyalgia patients and can pose as a major problem in coping for this patient group.

Temporo-mandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to
as TMJD, causes tremendous face and head pain in one quarter of FMS patients. However, a
1997 report indicates that as many as 90% of fibromyalgia patients may have jaw and facial tenderness that could produce, at least intermittently, symptoms of TMJD. Most of the problems associated with this condition are thought to be related to the muscles and ligaments surrounding the joint and not necessarily the joint itself.

Multiple Chemical Sensitivity Syndrome - Sensitivities to odours, noise, bright lights, medications and various foods is common in roughly 50% of FMS or CFS patients.

Other common symptoms - Painful menstrual periods (dysmenorrhea), chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, frequent changes in eye prescription, dizziness, and impaired coordination can occur.

POSSIBLE CAUSES

The cause of fibromyalgia and chronic fatigue syndrome remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection (viral or bacterial), an automobile accident or the development of another disorder, such as Rheumatoid arthritis, lupus, or hypothyroidism. These triggering events probably don't cause FMS, but rather, they may awaken an underlying physiological abnormality that's already present in the form of genetic predisposition.

What could this abnormality be? Theories pertaining to alterations in neurotransmitter regulation (particularly serotonin and noradrenalin, and substance P), immune system function, sleep physiology, and hormonal control are under investigation. Substance P is a pain neurotransmitter that has been found by repeat studies to be elevated threefold in the spinal fluid of fibromyalgia patients. Two hormones that have been shown to be abnormal are cortisol and growth hormone. In addition, modern brain imaging techniques are being used to explore various aspects of brain function--while the structure may be intact, there is likely a dysregulation in the way the brain operates. The body's response to exercise, stress and simple alterations in position (vertical versus horizontal) are also being evaluated to determine if the autonomic nervous system is not working properly. Your body uses many neurotransmitters, such as noradrenalin and adrenalin, to regulate your heart, lungs and other vital organs that you don't have to consciously think about. Ironically, many of the drugs prescribed for FMS/CFS may have a favourable impact on these transmitters as well.

Aggravating factors - Changes in weather, cold or draughty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion can all contribute to symptom flare-ups.

COMMON TREATMENTS...

PHARMACEUTICAL

Traditional treatments are geared toward improving the quality of sleep, as well as reducing pain. Because deep level (stage 4) sleep is so crucial for many body functions, such as tissue repair, antibody production, and perhaps even the regulation of various neurotransmitters, hormones and immune system chemicals, the sleep disorders that frequently occur in fibromyalgia and chronic fatigue patients are thought to be a major contributing factor to the symptoms of this condition. Medicines that boost your body's level of serotonin and noradrenalin--neurotransmitters that modulate sleep, pain and immune system function--are commonly prescribed. Examples of drugs in this category would include Lentizol or Tryptizol (amitriptyline), Sinequan (doxepin), Seroxat (paroxetine) and Dutonin (nefazodone). A low dose of one of these medications may be of help, they can improve the quality of sleep and may reduce pain perception. Routine use of most sleeping pills should be avoided, as they are habit forming. Newer sleeping medications such as Stilnoct (Ambien) might prove useful in some cases.

See Medication

OTHER TREATMENTS

Acupuncture, acupressure, nutrition, relaxation techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or a gentle exercise program. Therapeutic massage, heat or hot baths, ice massage, biofeedback and other relaxation techniques, stress reduction, behaviour modifications, body mechanics, posture training, cognitive behaviour therapy and meditation.

EXERCISE

A program of stretching and gentle exercise is essential for FMS patients. A physical therapist or exercise physiologist can help you put together a program that will be beneficial in maintaining muscle tone and a reasonable level of aerobic fitness. Walking, stationary exercise equipment, pool therapy, and stretching seem to be the most suitable activities for the FMS patient. The key is to start slowly and increase your exercise time and level carefully.

There is increasing evidence that a regular exercise routine is essential for all fibromyalgia syndrome patients. This is easier said than done because increased pain and fatigue caused by repetitive exertion makes regular exercise quite difficult. However, those patients who do get into an exercise regimen experience worthwhile improvement and are reluctant to give up. In general, FMS patients must avoid impact-loading exertion such as jogging, basketball, aerobics, etc. Regular walking, the use of a stationary exercise cycle and pool therapy utilizing an Aqua Jogger (a flotation device which allows the user to walk or run in the swimming pool while remaining upright) seem to be the most suitable activities for FMS patients to pursue. Supervision by a physical therapist or exercise physiologist is of benefit wherever possible. In general, 20 minutes of physical activity, 3 times a week at 70% of maximum heart rate (220 minus your age) is sufficient to maintain a reasonable level of aerobic fitness.

Purchase the Self Help Exercise Guide for Fibromyalgia

DIET

Some research has suggested that eating foods with low sugar content can help FM sufferers.
The easiest way to do this is to consult a Glycemic index.

TAKING CHARGE OF YOUR FMS

The treatment of FMS can be frustrating for both patients and their physicians. It is important for people with FMS to become active participants in their own health care, not just recipients. By learning self-management techniques, they will be able to handle their symptoms more effectively. Education is essential for this process. Local support groups and educational seminars can be very beneficial in gaining greater understanding.
Use the Symptom Diary to monitor your condition.

We publish the magazine "FaMily". Join today and begin the path towards taking charge of your Fibromyalgia In this publication, you will read about research findings, new treatment options, and tips on coping with fibromyalgia. Audio and videotapes, previous newsletter issues, and support group listings are also available.

Most FMS patients quickly learn there are certain things they do on a daily basis that seem to make their pain problem worse. These actions usually involve the repetitive use of muscles or prolonged tensing of a muscle, such as the muscles of the upper back while looking at a Computer screen. Careful detective work is required by the patient to note these associations and where possible to modify or eliminate them. Pacing of activities is important; we have recommended patients use a stopwatch that beeps every 20 minutes. Whatever they are doing at that time should be stopped and a minute should be taken to do something else.

For instance, if they are sitting down, they should get up and walk around or vice versa. Patients who are involved in fairly vigorous manual occupations often need to have their work environment modified and may need to be retrained in a completely different job. Certain people are so severely affected, that consideration must be given to some form of monetary disability assistance. This decision requires careful consideration, as disability usually causes adverse financial consequences as well as a loss of self esteem. In general, doctors are reluctant to declare fibromyalgia patients disabled and it is worth seeking specialist help. We are in the process of producing a nationwide network of sympathetic doctors. This information will be announced in FaMily Magazine.

Research into Fibromyalgia Syndrome

Over the past 10 years there has been increasing recognition and interest in fibromyalgia syndrome. There are now over 1,000 publications in medical literature relating to this condition. Click here to visit those resources.

Research News

What's the Difference between FM and Chronic Fatigue (M.E.)?

Some doctors treat fibromyalgia (FMS) and chronic fatigue syndrome (CFS) separately, while others think they are actually the same thing – or at least, variations of the same condition. According to the Arthritis Foundation, research shows that 50 to 70 percent of people with one diagnosis also fit the criteria for the other.

Similarities

FMS and CFS are known to have a host of symptoms in common. They include:

Pain
Fatigue
Sleep disorders
Irritable bowel syndrome symptoms
Chronic headaches
Association with Temporomandibular Joint Syndrome (TMJ)
Cognitive or memory impairment
Dizziness
Impaired coordination

Differences

One key difference, when it comes to a diagnosis, is which symptom is worst – pain or fatigue. The diagnosis could also be influenced by whether your doctor is more familiar with the American College of Rheumatology's criteria for FMS or the CDC's guidelines for CFS.

However, experts have found some significant differences. CFS tends to begin after flu-like symptoms and may be linked to a virus. CFS patients often have high levels of a cellular antiviral enzyme called RNase L, while the level is normal in FMS patients. Also, CFS diagnostic criteria include low-grade fever and sore throat, while FMS criteria do not. Meanwhile, the onset of FMS frequently is traced to a physical or emotional trauma. The pain of FMS gets better with heat and massage, while the pain of CFS does not. Further, people with FMS have tender points and abnormal levels of a cellular chemical called substance P (which transmits pain signals), and this level appears to be normal in those with CFS.

Why it Matters

In the end, does it really matter? Some used to say it didn't. Now, however, the drug Lyrica (pregabalin) is approved for fibromyalgia. The FDA also is considering New Drug Appliations for Cymbalta (duloxetine) and milnacipran as FMS treatments, as well as Ampligen (poly I: poly C12U) for CFS. Lyrica, Cymbalta and milnacipran all boost certain neurotransmitters, which may be normal or even already elevated in people with CFS. Ampligen modifies the immune system. It could be dangerous to take these drugs if you don't have the problems they're intended to correct.

The best course of action is to talk to your doctor about both conditions and make sure you've done all you can to solidify your diagnosis.

New diagnostic criteria set in 2010 for fibromyalgia

In 2010 the ACR proposed new diagnostic criteria for fibromyalgia. The old criteria did not take into account other important symptoms such as fatigue, sleep disturbance and cognitive dysfunction. It also did not accommodate for fluctuations in disease or effectiveness of new treatments. Symptom severity was also not measured. Another shortcoming of the old criteria is that men with fibromyalgia do not have as much tenderness as women. The new criteria include:

Widespread pain index - Determined by counting the number of areas the patients has felt pain in the last week. The checklist includes 19 specified areas.

Symptom Severity Scale - Determined by a rating of 0-3, 3 being the most pervasive, of the severity of three common symptoms: fatigue, waking unrefreshed and cognitive symptoms. An additional 0-3 points can be given to account for the severity of other common symptoms such as nausea, irritable bowel, numbness, dizziness or depression. This gives a final score of 0-12 points.

Fibromyalgia diagnosis would require:

7 areas of pain and a severity score of 5 points,
or pain in 3-6 areas and a score of 9 or more.

The symptoms must still remain for at least 3 months and not be part of another disorder.

Finally

Do not let your medical provider suggest that fibromyalgia is "all in your mind",fibromyalgia has an ICD-9 CM code, is defined by authoritative medical references, and has FDA-approved medications with labeled indications for treatment of the disease.

If your doctor tells you this, quote from the 2008, 1,319 page, 4th edition of RAJ'S PRACTICAL MANAGEMENT OF PAIN, devoting a fifteen page section on FM.

From the first two paragraphs in the subsection, Pathogenesis, we find, "The cause of FM is still unknown. Theories regarding its cause have undergone a gradual transition from a psychiatric process, as some still view it, to a muscle disorder, as currently classified in the Medline Index, to a genetically determined central nervous system disorder of chronic widespread allodynia, neuro-endocrine function, and cytokine participation, as it should now be considered. The situation with FMS has changed dramatically in just a few years of concentrated research. Where FMS patients were often viewed as healthy complainers, without any real abnormalities, or considered to be depressed somatizers, the psychiatric model is no longer adequate. Abnormalities in neuro-chemical mediators of central nervous system nociceptive function are clearly present in ways consistent with the patterns of symptoms."

The symptoms and diagnosis of ME/CFS
Article Index

> Typical features of ME/CFS
> Conditions with symptoms in common
> Tests helpful with diagnosis
> A brief discussion of diagnostic criteria
> Further information

The following is provided for your information only. The diagnosis of ME/CFS should be determined only by a suitably qualified medical professional.

Despite the fact that the Department of Health now accepts ME/CFS as a genuine medical condition, diagnosis can still pose a problem because ME/CFS symptoms are similar to those present in a number of other medical conditions. In addition, there are no examination findings which can confirm the diagnosis. This means there has to be a process of elimination (the exclusion of other conditions) before a diagnosis of ME/CFS can be made.

Several different diagnostic criteria have now been published in the UK, USA and Australia. The CDC criteria (reference: Annals of Internal Medicine, 1994, 121, 953-959) are frequently used when selecting ME/CFS patients for research studies.

However, these criteria have a number of defects (e.g. you have to have been ill for at least six months before ME/CFS is confirmed) and anecdotal reports suggest there are a significant minority of people with genuine ME/CFS who do not have a sufficient number of different symptoms to fulfil the strict CDC definition. Such conditions may have a relevance when selecting people for research studies, but delaying or withholding a diagnosis on these grounds is not helpful. It can cause problems with employers, schools, benefit claims etc.It can also affect the individual’s recovery if they are unable take sufficient rest early on and manage their condition sensibly, rather than having to ‘soldier on’. It is known that stress exacerbates the condition.


The typical features of ME/CFS


Commonly, a previously fit and active person finds their illness triggered by an infection. Less common triggers include toxins, organophosphate pesticides, vaccinations, major trauma or stress (e.g. a road traffic accident), pregnancy and surgical operations.

In some cases there is no obvious precipitating event and the person reports a gradual decline in health over a period of months or even years.

The predominant symptom of ME/CFS is usually severe fatigue and malaise following mental or physical activity. The full extent of this exhaustion often becomes apparent only 24 to 48 hours after the activity (assuming, of course, the person was not already in a ‘recovery period’ from a previous activity).

The other main symptoms are:

Muscle symptoms include exercise intolerance and post-exertional malaise (i.e. feeling shattered the day after undue physical activity), pain/myalgia (present in around 75% of people) and fasciculations (visible twitching of the muscles which sometimes includes blepharospasm/eyelid twitching).
Brain and Central Nervous System symptoms include cognitive dysfunction (problems with short-term memory, concentration and maintaining attention), clumsiness, disequilibrium likened to ‘walking on rubber’, and word finding abilities. Problems with control of the autonomic nervous system results in palpitations, sweating episodes and symptoms associated with low blood pressure/postural hypotension (e.g. fainting).
Symptoms which suggest on-going abnormalities in immune system function include sore throats, enlarged glands, joint pains, headaches, problems with temperature control and intermittent flu-like feelings.
Other symptoms which frequently occur in ME/CFS include sleep disturbances (often increased requirements at the onset followed by an inability to maintain a full night’s sleep), alcohol intolerance (a very characteristic feature, particularly in the early period of illness) and irritable bowel symptomatology.
Some people also develop emotional lability or mood swings and features of clinical depression as time goes on.
Besides these more obvious and wide-spread symptoms there are also myriad “minor” ones. Not everyone experiences all of them and often they are not mentioned when patients describe their illness; however there is often very visible relief when they find others, too, have similar experiences.

ME/CFS symptoms tend to fluctuate in severity throughout the course of a day and people often report that they have both ‘good days’ and ‘bad days’, although the term ‘good’ is often used in a relative sense. The illness nearly always results in a severe reduction in a person’s ability to cope with all aspects of normal daily living (i.e. social and sporting activities, employment, household tasks). Relapses or exacerbations are often precipitated by infections, excessive physical or mental stress, general anaesthetics and surgical operations, and extremes of temperature.
Conditions which have symptoms in common with ME/CFS

There are a variety of hormonal (e.g. hypothyroidism), rheumatological (e.g. lupus/SLE), neurological (e.g. multiple sclerosis), infective (e.g. Lyme disease and hepatitis B/C virus) and gastrointestinal (e.g. coeliac disease) conditions which can all produce very similar symptoms to those found in ME/CFS. This is why it is so important for doctors to take a detailed clinical history from anyone suspected of having ME/CFS (especially when there are atypical features present) and arrange appropriate investigations if the diagnosis is in doubt.
Tests helpful in making a diagnosis

The main value of blood tests in the assessment of someone with possible ME/CFS is to exclude other common conditions which produce fatigue as a principle symptom. This means the following tests should always be considered before a diagnosis is confirmed; these can be arranged by your GP if she/he is agreeable:

anaemia
People with ME/CFS do not have anaemia as part of this illness. If the haemoglobin level is reduced, then an alternative explanation should always be pursued.
white cell count
A measurement of the number of cells which fight off infection. This count is often increased during the early stages of an infection but as ME/CFS becomes chronic, the level usually starts to return to normal. Some people with ME/CFS have abnormally shaped white cells (atypical lymphocytes), particularly following glandular fever. A raised level of a type of white cell known as eosinophils can occur with allergies or when infection with toxocara is present (the latter should always be queried when a child has eosinophilia).
ESR or acute phase protein changes (e.g.CRP)

The ESR test is a useful indicator of general health. If raised, this suggests some form of chronic infection or inflammation is present. The vast majority of people with ME/CFS have a normal ESR.
liver, thyroid and kidney function tests
Liver function tests are sometimes abnormal in ME/CFS. This may be due to the precipitating infection causing liver inflammation or the effects of antidepressant drugs. There is also a condition called Gilbert’s disease which seems to be more common in people with ME/CFS (ref: Lancet, 1993, 341, 842 and 1162-1163). If liver tests remain abnormal then further investigation may be warranted. There is no evidence that hormonal disturbances in ME/CFS involve the thyroid gland: the results of thyroid function tests should always be normal.
routine biochemistry (urea, electrolytes, calcium etc.)
results should all be within the normal range. A raised level of blood calcium could be due to sarcoidosis. A lowered level may indicate osteomalacia (a bone disease causing fatigue and bone pain). Research from Australia indicates that the total amount of body potassium may be lowered in ME/CFS (ref: Medical Journal of Australia, 1996, 164, 384). A raised level of potassium can occur in Addison’s disease.

creatine kinase
urine tests for sugar/protein
hormone levels
In some cases, investigations should also include checking female hormone levels (serum oestradiol) and adrenal gland function.

Other blood tests which could be considered will depend on specific symptoms. For example, if irritable bowel symptoms are experienced then checking for adult-onset coeliac disease would be worthwhile, particularly if the symptoms appear to be relieved by a wheat-free diet.

A number of research studies have now reported on characteristic abnormalities in certain hormones (e.g. cortisol, prolactin and arginine vasopressin) which come under the control of a part of the brain known as the hypothalamus. However, these results are not consistently abnormal in all ME/CFS patients. Neither are the tests readily available outside research units.

Blood flow scans of the brain (SPECT scans) have produced interesting results (i.e. brain stem hypoperfusion) which appear to be almost unique to ME/CFS, but these are not widely available. Blood flow abnormalities in the brain stem will need to be confirmed by other research groups before they can be considered as a useful diagnostic aid.
A brief discussion of diagnostic criteria

The clinical features of ME were first clearly described by the late Dr. Melvin Ramsay MA MD (a physician at the Royal Free Hospital in London during an epidemic outbreak in 1955, and The ME Association’s first President). Since then, in the light of there being no diagnostic tests, there have been several more attempts to define the illness by way of its symptoms, although never with all-round agreement.

In recent years there have been the American Center for Disease Control (CDC) definition, the “Oxford Criteria” and more recently the “Canadian Guidelines”. Although the first two criteria tend to be used as a diagnostic aid by many clinicians, they were compiled primarily for researchers to identify particular sets of people for their studies. These earlier definitions (of “CFS” as opposed to “ME”) give various physical and neurological symptoms; however, in these definitions, the cardinal features of “ME” – the muscle fatigability and pain, and post-exertional malaise – do not have to be present for such a diagnosis. This suggests that nowadays, not everyone with a diagnosis of “Chronic Fatigue Syndrome” necessarily has the disease “ME” as described by Dr Ramsay. It also seems that CFS can cover a spectrum of fatigue-prominent diseases, possibly including illness based in depression, stress or ‘burn-out’. However the Canadian Guidelines were developed with clinicians more in mind.

Two other features of ME are first the fluctuation of symptoms from day to day, or within the day; and secondly the tendency for the condition to persist for several years.

Dr Ramsay’s description included the following:

The onset of the disease may be sudden and without apparent cause… but usually there is a history of infection of the upper respiratory tract or, occasionally, the gastrointestinal tract with nausea and/or vomiting. Instead of an uneventful recovery, the patient is dogged by persistent and profound fatigue accompanied by a medley of symptoms such as headache, giddiness, muscle pain, cramps or twitchings, muscle tenderness and weakness, paraesthesiae, frequency of micturition, blurred vision and/or diplopia, hyperacusis, tinnitus and a general feeling of ‘feeling awful’… the phenomenon of muscle fatigability is the dominant and most persistent feature of the disease and in my opinion a diagnosis should never be made without it. …If muscle power is found to be satisfactory, a re-examination should be made after exercise; a walk of half a mile is sufficient, as very few ME cases can manage more… Restoration of muscle power can take three to five days or even longer.
From Post-viral Fatigue Syndrome by A. Melvin Ramsay MA MD.

The CDC criteria are broadly as follows:

Clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (i.e., not lifelong), is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction in previous levels of occupational, educational, social, or personal activities.
The concurrent occurrence of four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. These symptoms must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue.

(Note that although post-exertional malaise is listed, it does not have to be present for this diagnosis to be given.)

The CDC’s own website gives further details of the CDC definition.

The Oxford criteria identify two broad syndromes (remember these definitions are primarily for research purposes):

1. Chronic Fatigue Syndrome

fatigue is the principal symptom: it is severe, disabling and affects physical and mental functioning; it should have been present for a minimum of 6 months during which it was present for more than 50% of the time.
other symptoms may be present: particularly myalgia, mood swings and sleep disturbances.
definite onset of symptoms, not life-long.
exceptions: patients with established medical conditions known to produce chronic fatigue; also patients with a current diagnosis of schizophrenia, manic depressive illness, substance abuse, eating disorder or proven organic brain disease.

2. Post-infectious Fatigue Syndrome (PIFS)

A sub-type of CFS which either follows an infection or is associated with a current infection (although whether such associated infection is of aetiological significance (i.e. whether it is the cause of the symptoms) is a topic for research).
To meet the research criteria for PIFS patients must:
i. fulfil the criteria for CFS as defined above (i.e. the Oxford definition)
ii. should also fulfil the following additional criteria:
(a) There is definite evidence of infection at onset or presentation (a patient’s self-report is unlikely to be sufficiently reliable).
(b) the syndrome is present for a minimum of 6 months after onset of infection.
(c) the infection has been corroborated by laboratory evidence.

The Canadian guidelines

The new Canadian Clinical Case Definition was written by U.S. and Canadian ME/CFS researchers.

In contrast to the 1994 CDC criteria, which make “fatigue” a compulsory symptom but downplay and make optional post-exertional sickness and other cardinal symptoms, the Canadian clinical case definition specifically selects patients whose condition gets worse with exercise. The clinical definition makes it clear that in order to meet the diagnostic criteria, the patient must become symptomatically ill after exercise, and must also have neurological, neurocognitive, neuroendocrine, dysautonomic (for example, orthostatic intolerance), and immune manifestations. So symptoms other than fatigue, must be present for a patient to meet the diagnostic criteria.

This case definition helps to distinguish ME/CFS patients from chronic fatigue patients, depressed patients, somatization, fibromyalgia, and other diseases with which ME/CFS has been confused, including those that improve with exercise. The Canadian definition specifically states that patients “become worse after exercise rather than better.” The new case definition, much of which is backed by research and hard science, is a strong counterstatement to the view held by many psychologists and psychiatrists.

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