By Sasha Nimmo

Australians are having their concerns dismissed by GPs, receiving harmful medical advice, refused insurance claims, refused access to support services, denied access to the Disability Support Pension and the National Disability Insurance scheme. In tens of thousands of cases, they are misdiagnosed or wait decades for a diagnosis. Read these excerpts from the chronic fatigue syndrome guidelines and see the problems.

This is in large part due to the 2002 Australian Guidelines for chronic fatigue syndrome.  The CFS guidelines were paid for by the Australian Government, written by the Royal Australian College of General Practitioners and published by the Medical Journal of Australia. When your doctor, specialist, health department or people working in other government departments, insurance companies or superannuation organisations are deciding about your illness, they consult this government document.

For government services and payments to change, government policy has to change.

It will be difficult to access support when the Australian Guidelines say “the notion of “permanent” disability is problematic, as most people with CFS improve gradually, and some eventually recover.” This is at odds with the scientific evidence. A systematic review of 14 papers (using a variety of criteria) found only 5% make a full recovery and only 39.5% of people improve.

The current Australian Guidelines were immediately criticised when they were released (here and here) yet they have persisted for 16 years. The NHMRC has appointed an advisory committee on ME and CFS who will offer advice on whether we need new guidelines. Several authors of the 2002 CFS guidelines are on the committee and others indicated they don’t see a need for updating the guidelines yet.

Here’s how Australia’s definition of chronic fatigue syndrome is different from ME, according to the International Consensus Criteria for ME Primer for Medical Practitioners:

WHO says ME is a disease, OZ Guidelines says CFS is a pattern of symptoms

What is CFS? "CFS" is a descriptive term used to define a recognisable pattern of symptoms that cannot be attributed to any alternative condition. The symptoms are currently believed to be the result of disturbed brain function, but the underlying pathophysiology is not known. Therefore, CFS cannot be defined as a specific "disease" entity at present. Indeed, there is growing evidence that the disorder is heterogeneous, and it will probably prove to have no single or simple aetiology.

Characteristically, there are no abnormal physical findings in people with CFS. The physical examination and mental state examination are therefore primarily directed towards excluding other disorders. A careful assessment for neurological deficits or signs of anaemia, cardiac failure, respiratory disease, hidden infection, connective tissue disease or tumour should be conducted. The presence of persistent fever, lymphadenopathy, or enlargement of the liver or spleen are not features of CFS and always warrant further investigation. The behavioural signs of psychiatric disorder should also be sought, including psychomotor slowing (major depression), physiological arousal (anxiety states and panic disorder) and cognitive deficits (delirium or dementia).

Chronic fatigue syndrome: Australia’s CFS finds “no abnormal physical findings”. CFS is not a “disease”, it’s a set of symptoms that can’t be attributed to another cause. “Excluding other disorders” makes it a diagnosis of exclusion or rubbish bin diagnosis.

Myalgic Encephalomyelitis: ICC ME finds multiple abnormal responses to exertion, neurological abnormalities, immune impairments & energy production impairments and provides a checklist for medical practitioners. ICC panel says it is a “disease” and “strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name”.

CFS a label that gives false impression?

In the general population, fatigue states form a continuum in terms of severity and duration, and it is only in those with the most severe and persistent symptoms that a diagnosis of 'CFS' may be appropriate. Although the internationally accepted CFS case definition remains the "gold standard" for diagnosis, it is necessarily arbitrary, having been developed for the purpose of making valid comparisons between research studies carried out in different settings. As such, it creates an artificial boundary within the clinical continuum of fatigue states, giving the false impression that a specific clinical "entity" has thereby been delineated.

CFS: States CFS is on a continuum of fatigue, not a delineated clinical entity.

ME: “Myalgic encephalomyelitis has been classified as a neurological disease by the WHO since 1969. WHO stipulates that the same condition cannot be classified to more than one rubric because, by definition, individual categories and subcategories must remain mutually exclusive. Thus, it is essential that patients meeting the ICC for ME are removed from overly inclusive groups.”

Overlaps with a mental health disorder

Perhaps the most difficult diagnostic uncertainty between CFS and psychological illness is in relation to "somatoform" disorders (DSM-IV107). In these disorders, people present with medically inexplicable physical symptoms that are hypothesised to be the result of underlying psychological processes. As the causes of CFS are "unexplained", there is an obvious overlap between the diagnostic criteria for the somatoform disorders and CFS

CFS: Australia’s guidelines on chronic fatigue syndrome say CFS is an “unexplained” illness that overlaps with a mental illness where physical symptoms are due to psychological problems.

ME: International Consensus Criteria’s definition of ME says “These observed pathological changes are consistent with neurological disorders but not psychiatric conditions”. This is in sharp contrast to the CFS guidelines, which focus on the psychiatric.

Overlaps with nervous exhaustion

Neurasthenia (literally meaning "nervous exhaustion") is a diagnosis included in the International classification of diseases (ICD-10) to describe a syndrome of mental and physical fatigue of at least three months' duration. The term has a long tradition of use in psychiatric classification,48 but the extent of its overlap with CFS, and with common psychological disorders such as anxiety and depression, remains to be determined.

CFS: Aust 2002 Guidelines say CFS is the same as ‘neurasthenia’, a psychiatric term: “weak nerves” in which the sufferer is “thought to be easily overwhelmed by the ordinary stresses of life, with resultant symptoms of somatization, anxiety & depression” (Mental Health Division, World Health Organisation).

Harmful and incorrect management instructions

managment-e1543387191595.png

What belief is holding them back?

The cognitive component aims to identify beliefs, attitudes and behaviours that may impair recovery.469-471 Examples include a fear that any increased physical activity will cause harm or prolong illness; a belief that all treatment is futile and that only complete rest will help; a belief that complete withdrawal from work, school and social activities is necessary; a belief that occult chronic infection or chemical exposure has caused permanent injury. The existence of such beliefs is ascertained by exploring the person's causal attributions and his or her understanding of the illness.

CFS:  Recommends graded exercise therapy and cognitive behavioural therapy. Thanks to work done to reveal data from the PACE trial, it is now widely known that these therapies are harmful. While CBT can help in living with a chronic illness, that is not the type of CBT recommended here. This CBT looks to see if the person has fears and beliefs holding them back from getting well.

ME: International Consensus Criteria says medical professionals should treat symptoms. “Prioritize greatest symptom concerns and dysfunctions in order to determine the best treatment strategies.  There isn’t focus on psychology in the ICC Primer: “These observed pathological changes are consistent with neurological disorders but not psychiatric conditions”.

OZ Guidelines – Disability can be defeated through treatment

Capture

Fatigue or adverse response to exercise?

Fatigue can be defined as a pervasive sense of tiredness or lack of energy that is not related exclusively to exertion. It is a common complaint in the community and is usually transitory. If fatigue is prolonged beyond six months, is disabling, and is accompanied by other characteristic constitutional and neuropsychiatric symptoms, then a diagnosis of chronic fatigue syndrome (CFS) should be considered.

CFS: ‘Tiredness or lack of energy”.

ME: ME is an “adverse response to exertion”.

Is attitude the problem?

Physical activity  In general, people with CFS should be encouraged to undertake physical and intellectual tasks, starting at a level that is tolerated without significant exacerbation of symptoms. This should initially be in divided sessions of relatively short duration. As exercise tolerance improves, duration and intensity of activity can be gradually increased. Graded exercise programs have been shown to be beneficial for some people with CFS, and can improve functional status.  It is important to discuss with the patient the vicious circle whereby initial avoidance of physical activity may lead to longer-term avoidance of all activity. In the early stages of the illness, many people with CFS put off chores or social engagements until they feel better, then push themselves excessively on "good days" to make up for lost time. The subsequent worsening of symptoms and delayed recovery can establish a cyclic pattern of illness and disability.

Understanding the illness  Helping people with CFS understand the nature of their illness is an important element of good clinical management. For example, some people harbour fears that an occult infection, environmental pollutants or electromagnetic fields may be causing irreversible neurological or immunological damage. Others may have been led to believe that any physical activity at all could be harmful. Unwarranted concerns of this kind may lead to maladaptive attitudes and behaviours that may increase disability and retard recovery

In managing people with CFS it is important to:      develop an individualised management plan for physical and social rehabilitation;      discourage excessive rest and minimise social isolation;

CFS: Encourages graded exercise therapy, which the ME Association (UK) found harmed 78% of respondents. Warns against “longer-term avoidance of physical activity” and states that “maladaptive attitudes and behaviours…may increase disability and retard recovery”, blaming sick people for becoming sicker.

ME: ICC recognises exercise can harm: “Both submaximal & self-paced physiological limited exercise can result in PENE.” It explains  “the dysfunctional activity/rest control system and loss of homeostasis result in impaired aerobic energy production and an inability to produce sufficient energy on demand. A test-retest cardiopulmonary exercise study revealed a drop of 22% in peak VO2 and 27% in VO2 at AT on the second day evaluation.”

Doctor lying to you or you lying to the doctor

the concern of some that "medicalisation" associated with providing a diagnostic label of CFS may create a self-fulfilling prophecy514 is not usually borne out by experience.510,511 In certain patients, however, the practitioner may consider it prudent to refrain from making a definitive diagnosis of CFS, or at least to be much more circumspect in applying the label. Thus, when the prognostic features are favourable (ie, younger age, less severe symptoms, shorter duration of illness) a more non-committal diagnosis, such as "post-infectious fatigue state", may be appropriate.

CFS: The guidelines suggest the doctor consider not tell you that you have chronic fatigue syndrome in case it becomes a “self-fulfilling prophecy”. However while they might withhold information from you, doctors are advised to see if you are lying to them, by verifying your own reports of your illness and asking others if it is true. “Whenever possible, an independent, corroborating history should be sought from a spouse, partner or other family member.” With ME affecting four times as many women as men, this is commonly asking a man whether or not a woman is sick, instead of investigating a woman’s symptoms.

What does your husband or significant other say?

Many people with depressive disorders complain of fatigue or pain, rather than overt psychological symptoms such as tearfulness or sadness. The family history should be reviewed for depressive disorder, self-destructive behaviour or substance misuse. The relationship between the onset of the fatigue state and relevant psychosocial stressors should be noted. Whenever possible, an independent, corroborating history should be sought from a spouse, partner or other family member.

To have your say in whether the Australian 2002 chronic fatigue syndrome guidelines should be scrapped and we should have new ones based on the 2012 International Consensus Primer on ME for Medical Practitioners, ensure you provide feedback to the NHMRC once they release their report for comment, To be notified when the public consultation period is open, email me_cfs(at)nhmrc.gov.au.

Follow @MyalgicE for updates on Twitter.