CFS is a debilitating illness involving symptoms and abnormalities of the immune system, circulatory system, central nervous system, and hypothalamic-pituitary-adrenal axis. - Dr. Katrina Berne, PhD (clinical psychologist)

CFS :: Chronic Fatigue Syndrome

Chronic Fatigue Syndrome (CFS) is not just tiredness, extreme tiredness, prolonged fatigue or chronig fatigue but a severe flu-like illness with severe complications that is usually precipitated by a virus or other infectious agents, Infectious Mononucleosis/Glandular Fever(Epstein-Barr virus), Ross River fever, Q-Fever, Toxoplasmosis are but some here in the Tropical North. Symptoms patients may suffer include exhaustion after minor effort(unrelieved by rest), severe headaches, memory and /or concentration and /or thought process problems, sore throat, muscle and joint pain, irritable bowel, disturbed sleep, food allergies/sensitivities and sensitivity to bright light and noise and many more. CFS is also known as Chronic Fatigue Immune Dysfunction Syndrome (mainly in the USA) and interchanges with Myalgic Encephalomyelitis (mainly in the UK). Although the CDC now distinguishes between the terms; "ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.", meanwhile the UK is still trying to ascertain whether a S. Wessely is mentioned in the Magna Carta. It is time to diagnose suffering people not label them.

Fibromyalgia Syndrome (FMS) patients suffer very similar symptoms but pain is much more prominent. Patients are diagnosed by the presence of 11 or more tender points (refer above link).

Both illnesses may be severely disabling, with some patients being largely bed bound. While many studies report higher levels of certain physical abnormalities in CFS/FM patients than in the healthy population, there currently isn't a validated diagnostic test. Diagnosis is made on the basis of symptom presentation.

The chronic fatigue syndrome is a clinically defined condition (1-4) characterized by severe disabling fatigue and a combination of symptoms that prominently features self-reported impairments in concentration and short-term memory, sleep disturbances, and musculoskeletal pain. Diagnosis of the chronic fatigue syndrome can be made only after alternative medical and psychiatric causes of chronic fatiguing illness have been excluded. No pathognomonic signs or diagnostic tests for this condition have been validated in scientific studies (5-7); moreover, no definitive treatments for it exist (8). Recent longitudinal studies suggest that some persons affected by the chronic fatigue syndrome improve with time but that most remain functionally impaired for several years (9, 10).

Ann Intern Med : Dec. 15; 1994 Vol. 121; #12: Pgs :953-959.

How is CFS diagnosed?

There is no currently accepted, definitive test for CFS. The currently most widely accepted criteria for diagnosing CFS were published in the Annals of Internal Medicine, Vol 121, No 12, PP953 -959 on December 15, 1994. For a CFS diagnosis all other possible conditions must be excluded and the following 2 criteria must be present:

  1. Clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is of new or definite onset (has not been 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.
  2. The concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue:
    • self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities,
    • sore throat,
    • tender cervical or axillary lymph nodes,
    • muscle pain,
    • multi-joint pain without joint swelling or redness,
    • headaches of a new type, pattern, or severity,
    • unrefreshing sleep, and
    • post-exertional malaise lasting more than 24 hours.
This 1994 definition(Fukuda et al.,) liberalises a more restrictive 1988 definition(Holmes et al.,).

What conditions should be excluded before a diagnosis of CFS is made? While you doctor should exclude the possibility of all the below conditions, particular attention should be paid to phosphate diabetes, sleep problems and coeliac's disease as these conditions are commonly missed by GPs.

  • Neuromuscular Disease:
    • Multiple Sclerosis,
    • Myasthenia Gravis,
    • Parkinson's Disease,
    • rare muscle disorders.
  • Chronic Infections:
    • Brucellosis,
    • Giardia,
    • Hepatitis A,B,C,
    • HIV,
    • Leptospirosis hardjo,
    • Lyme Disease,
    • Parvovirus,
    • Post-polio Syndrome,
    • Toxocara (children),
    • Toxoplasmosis.
  • Gastric Disorders:
    • Coeliac's Disease,
    • Crohn's Disease,
    • Food Allergies,
    • Irritable Bowel Syndrome.
  • Hormonal Imbalance:
    • Addison's Disease,
    • Fluid Retention Syndrome,
    • Hypothyroidism,
    • Haemochromatosis,
    • Hypocalcaemia,
    • Hyponatraemia,
    • Thyrotoxicosis,
    • Pituitary Tumour .
  • Psychiatric Disorders:
    • Anxiety,
    • Depression,
    • Post Traumatic Stress Disorder.
  • Rheumatic Disorders:
    • Fibromyalgia,
    • Sjogren's Syndrome,
    • Systemic Lupus Erythematosus.
  • Miscellaneous:
    • Alcohol abuse,
    • Anaemia,
    • Cervical Canal Stenosis,
    • Chiari Syndrome,
    • Hodgkin's Lymphoma,
    • Organophosphate pesticides,
    • Phosphate Diabetes,
    • Sarcoidosis,
    • Sick Building Syndrome,
    • Sleep Apnoea and Narcolepsy,
    • TB - Tuberculosis.

What causes CFS?

There are many viruses and infectious entities that have been associated with chronic fatigue syndrome, to date there have been no convictions, the prosecution is still trying to build a case. As to whether we are looking at a sequelae or a continuing infection is still an ongoing debate: Probably both will find validity in the many subsets that find life under this rather ubiquitous phrase.

Endocrine dysfunction -particularly adrenal insufficiency, and Neurological dysfunction can be caused by any original virus/toxin/infection.

Who gets CFS?

CFS strikes people of all ages, races and socioeconomic backgrounds although the early stats indicated those most able to afford medical intervention. Most diagnosed cases fall into the 15 to 45 age group (at onset). Women would appear to be more likely to develop CFS, with some studies suggesting that up to two thirds of all PWCs are women. A 1980's media description of CFS as "yuppie flu" is completely inaccurate - it crosses all socioeconomic barriers, and, in fact, appears to be more common in the less well off. The confused diagnostic criteria could distort any figures put forward.

How many people have CFS?

There are no precise figures of how many people have CFS. This is due to the fact that many people may be unsure of what they have, many doctors have hitherto not accepted that PWCs are ill and some PWCs simply 'drop out' when they cannot get any medical help.

In May 2002, a Working Group formed under the auspices of the Royal Australasian College of Physicians published a report that estimated from the published literature that between 0.2% and 0.7% of the population has CFS. This equates to between about 42,000 and 147,000 Australians. By way of comparison, about 22,000 Australians have been infected with HIV and about 15,000 have multiple sclerosis.

Are PWCs "malingering" or psychiatric cases?

Unfortunately, the name chronic fatigue syndrome unfairly implies that what is a quite painful, severe illness may only be tiredness or something imaginary.
A committee under the US Secretary for Health is currently considering a name change. Don't hold your breath.
No serious researcher in the CFS area believes that they are looking at a trivial or imagined condition. In 1989, a New Zealand researcher, Dr L Simpson, had his research published in the New Zealand Medical Journal( one year after the CFS term was created). It showed that PWCs, as a group, had larger numbers of misshapen red blood cells than people not suffering from CFS (similar studies have also demonstrated this phenomenon). Since then there have been more than 300 studies documenting various physical abnormalities observed in PWCs as a group. A partial list of studies can be obtained from our office.

Unfortunately, many doctors are not familiar with these studies. Doctors may also obtain the list of studies from our office or the special doctors' kit.

What are the symptoms?

The symptoms of CFS vary from person to person. The symptoms which are almost always present are exhaustion after a small amount of activity, difficulties with memory and concentration, headaches, face pallor particularly when symptoms are severe, and disrupted and disturbed sleep. Other symptoms can include sore throats, fever, raised glands, dizziness and balance problems, muscle weakness and pain, sore joints, sensitivity to noise and light, sensitivity to heat and cold, cognitive function problems (such as spatial disorientation and impairment of speech and reasoning), sensitivity to alcohol, irregular heartbeat, abdominal pain, irritable bowel, diarrhoea, dryness of the mouth and eyes, cold hands and feet, weight changes without changes in diet, anxiety and irritability, and new allergies or sensitivities to foods or chemicals. A list of symptoms that PWCs and their health professionals have recorded is available here...

Can CFS be treated and what is the prognosis?

The vast majority of PWCs experience some improvement in the condition and At least (and could be more if there were more accurate figures) 13% to 25% make a full recovery
Unfortunately, it does appear that about one fifth to one quarter of PWCs face a very long-term problem with the condition. The important thing is to take all sensible measures to get better and make sure that you are not one of these unfortunates!

Is there any action to find a cure to CFS?

Yes! And your help is needed! Research teams at the University of Newcastle, the University of Adelaide, Sydney, UQ, Monash and Perth to mention a few are working on CFS but are woefully underfunded. Your donation and your voice are needed! Please join us to help; Donations to the projects can be made via State Associations, or Tax deductible donations can be made on-line to ME/CFS Australia Ltd. ABN 23 088 896 299; ACN 088 896 299



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Clauw and Chrousos (1997) argue that the inability of science to identify the precise physiologic basis for CFS should not lead to labeling an individual with CFS as having a psychiatric disorder, and in fact, this dualistic thinking about diseases as being either psychiatric or medical should probably be abandoned.


MAY 12   2009
ME / CFS International Awareness Day RibbonME CFSME International Awareness Day Brame Ribbon
CFS / ME
International
Awareness Day


Yuppie Flu: this is a factually inaccurate nickname for CFS, first published in a November 1990 Newsweek article. It reflects the belief that CFS mainly affects the affluent ("yuppies"), and implies that it is a form of malingering or burnout. CFS, however, affects people of all races, genders, and social standings, and this nickname is inaccurate and considered offensive by patients. It is likely that this article contributed to the damaging public (and even medical) perception of CFS as a psychiatric or even psychosomatic condition.

 
 
 
 
 

The Whittemore Peterson Institute

Annette Whittemore wants answers more than anything. Her daughter Andrea has struggled with chronic fatigue syndrome for 18 years. By creating the Whittemore Peterson Institute for Neuro Immune Disease she hopes to help thousands of people starting with her daughter. "I said, 'why isn't anybody doing anything?' And at some point you realize that maybe you are the one who is suppose to do something."

So what do we know about chronic fatigue syndrome? Those who have it have a huge rate of shingles as well. We know the disease often ends up as cancer. And now, because of scientists right here in Reno we might know what causes it. "We have identified and we are in the process of isolating a new virus that may cause cfs in the cohort."









ME/CFS International Awareness Day



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