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 Physicians 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
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?
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
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
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
What belief is holding them back?
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
Fatigue or adverse response to exercise?
CFS: ‘Tiredness or lack of energy”.
ME: ME is an “adverse response to exertion”.
Is attitude the problem?
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
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?
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.