Failure to update medical guidelines see people with ME denied disability support

By ME Australia

Australians with Myalgic Encephalomyelitis and chronic fatigue syndrome are having their disability support pension, NDIS, superannuation and other requests for help denied due to the current Australian chronic fatigue syndrome guidelines, published back in 2002.  Myalgic Encephalomyelitis affects between 0.4 and 1 per cent of the population, including children, and one quarter are bed bound or housebound.

The World Health Organisation recognises Myalgic Encephalomyelitis and chronic fatigue syndrome as separate, but unfortunately the Australian government isn’t consistent and wrongly uses the terms interchangeably. For 50 years the World Health Organisation has classified ME as a neurological disease. 

Chronic fatigue syndrome is an ‘umbrella’ term and is often a diagnosis given when doctors cannot find another answer. ME and chronic fatigue syndrome are not the same and shouldn’t be used interchangeably. As the 2012 ME International Consensus Primer states, “misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions.” CF, or chronic fatigue, is a symptom of many illnesses so it is an unhelpful description.

Unfortunately, Australian GPs often get it wrong and Queensland researchers found that only a third of those diagnosed with CFS have ME. Another third don’t even meet the broad US CFS criteria (Fukuda). People misdiagnosed with chronic fatigue syndrome often have serious, treatable conditions so correct diagnosis is hugely important for everyone.

The stigma associated with chronic fatigue syndrome has meant that ME is not taken seriously as a disabling disease. Not everyone who has ME is disabled but 25% of people with ME are so severely affected they cannot leave home or bed.

A 2015 Danish study of people with ME found the population was “more disabled and socially marginalised than the average population with regard to the subjects of long-term illness, number of illnesses, proportion of disability pensioners and relationships.” Evaluating data on the quality of life, the researchers found people with ME “have the lowest, measured health-related quality of life of 20 conditions, thus even worse than multiple sclerosis and stroke.”

The Australian guidelines fail to recognise the seriousness of ME and people who are mostly bed bound, suffer severely debilitating and painful symptoms and can’t care for themselves are left without any helpful treatments. The Australian government guidelines give recommendations for graded exercise therapy, as if people are merely unfit. The ME Association found that graded exercise therapy made 78% of respondents worse, often reducing people’s level of functioning permanently.

Back in the 1990s, the federal government saw a need and commissioned guidelines on diagnosis and treatment. In 2002 the Australian chronic fatigue syndrome clinical guidelines were published after being commissioned by the National Health and Medical Research Council (nine years after the process started). They were heavily criticised for having a bias towards the psychological, dismissing biological evidence and omitting severely affected patients. Within weeks of their publication, the Australian Senate called for their immediate review, noting the guidelines were both inadequate and failed to reflect the consultation process.

Compared to the International Consensus Primer on ME for Medical Practitioners, the Australian guidelines fail to take patients concerns seriously; deny it is a ‘disease’; state it is on the ‘spectrum of fatigue’ and that there are ‘no abnormal findings’. The guidelines recommend cognitive behavioural therapy to “identify beliefs which beliefs, attitudes and behaviours holding back recovery” and many more troubling statements.

The National Health and Medical Research Commission (NHMRC) looks after all the clinical guidelines, and according to its own ‘Meeting Clinical Practice Guidelines’, all guidelines are meant to be reviewed every five years.

The NHMRC are currently considering a report from their ME and CFS advisory committee on the need for new guidelines. The Royal Australasian College of Physicians (RACP), authors of the current guidelines, advised it is awaiting the CEO’s consideration of the report and that it did not make a submission as the chair of the committee, Prof Kwun Fong, is a RACP member.

The guidelines are also intended to be replaced every 10 years, which means the Australian CFS guidelines should have been replaced seven years ago, in 2012.

Why didn’t we get new guidelines 7 years ago?

In 2012 Emerge Australia (then ME/CFS Australia (Victoria, Tas & NT)) committed to updating the guidelines, based on the then-new Myalgic Encephalomyelitis International Consensus Criteria. Emerge was given two years to deliver new clinical guidelines to the government.

In 2012 Alison Copely was the CEO of ME/CFS Australia (Victoria, Tas & NT), this was during the time Simon Molesworth was stepping down as President. Molesworth was strong in his letters to the authors about the failures of the 2002 Australian CFS guidelines, saying they would result in “the promotion of widespread misconceptions about the illness, inappropriate and inadequate medical care and further cases of misdiagnosis with potentially far-reaching and long-lasting, adverse effects.” Would he have imagined in 2002 how long-lasting these adverse effects would be, seventeen years later?

ME/CFS Australia (Victoria, Tas & NT) advocated for the use of ‘Myalgic Encephalomyelitis’ instead of ME/CFS as Copely told Vogue magazine (April 2012) “the term myalgic encephalomyelitis better describes the condition” and soon after the organisation changed their name to ‘Emerge’ to include the letters ‘ME’.

In 2013 the NHMRC met with Emerge to discuss updating the Guidelines. They were due in 2014, according to information NHMRC published on its website. When ME Australia queried where the new guidelines were, NHMRC advised updated guidelines were not provided and referred queries to Emerge.

Sadly Emerge were unable to develop new guidelines, using the ME ICC Primer for Medical Practitioners. Over the last few years, the NHMRC has heard from people with ME on the need for new guidelines. This is why the NHMRC asked for advice on the need for new guidelines through its ME and CFS advisory committee process.

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Emerge’s ribbons for ME and CFS Awareness (2018)
Issue Current guidelines say: What is needed:
Should health professionals share the diagnosis with their patients? Not always.

When they are younger, have less severe symptoms, shorter duration of illness a more non-committal diagnosis may be appropriate (s45) 

Yes.

Patients have the right to be correctly diagnosed. 

Should patients be trusted to tell practitioners about their health? No. 

Whenever possible, an independent, corroborating history should be sought from a spouse, partner or family member (s35) 

Yes. 

As outlined in – the Medical Board of Australia’s Good medical practice: a code of conduct for doctors in Australia (section three of Medical Board of Australia. 2014. Good medical practice: A code of conduct for doctors in Australia. )

Does it overlap with nervous exhaustion? Yes.

Extent of overlap with nervous exhaustion, anxiety and depression yet to be determined (s27-28) 

No. 

WHO ICD-11 ME and CFS are listed as neurological disease that occur following a viral infection (ME since 1969) 

WHO didn’t accept view put in 1970 that ME was mass hysteria (based on gender split) and suggestion it be called “myalgic nervosa”

Does it overlap with mental illness? Yes.

Obvious overlap of somatoform disorders and CFS (s29) 

No.

A/A and IOM Report – many health care professionals mistake it for a mental health condition

Do patients beliefs or attitudes stop them from recovering? Yes. 

Health practitioners should identify beliefs and attitudes that impair recovery (s40)

Studies that incorporate a cognitive component produce more sustained improvements (s40) 

No. 

Scientists have identified dysfunction within cells, this is the issue4 

CDC advises no current cure or treatment, suggest focus on managing symptoms

Does prescribing physical activity help cure a person? Yes. 

Physical activity and rehabilitation achieve good short-term results (s40) 

No. 

A/A and the AHRQ systematic review found no evidence exercise has any impact for people with ME or CFS – Fukuda criteria6 

Is it a distinct clinical illness or disease? No.

CFS creates an artificial boundary within a continuum of fatigue (s45). 

List of symptoms not a disease (s23) 

Yes. 

ME and CFS diseases in WHO ICD 11 

WHO listed ME as a disease since 1969 

Focus on fatigue related to exhaustion? No. 

If fatigue is >6 months, disabling and accompanied by neuropsychiatric conditions – diagnose CFS (s23) 

Yes. 

ME: ICC – people with ME have an adverse reaction to exertion 

ME: ICC – the use of ‘fatigue’ has been the most confusing and misused criterion 

Distinguish between ME and CFS? No Yes. 

WHO ICD -11 lists them separately

IOM Report recognises ME and CFS are distinct conditions under umbrella ME/CFS. See also ME: ICC

How has it affected people?

Stories from people across Australia show the impact that these guidelines are having on their life and ability to get pensions, disability support, insurance and access to their own superannuation.

Superannuation

“I missed out on permanent disability insurance from my superannuation, as I got wrong advice from all the doctors who thought ME was only temporary.”

Urged to do treatment that would worsen health

“I was told to get support from the Government, I had to go to the UNSW Clinic and undertake graded exercise therapy (GET) in order to prove I couldn’t get better.”

National Disability Insurance Scheme (NDIS)

“I’ve been rejected twice by the NDIS as I am not ‘disabled enough’ even though I’m housebound due to orthostatic intolerance and require personal care and home help. Insurance for Total and Permanent Disability (TPD) was also rejected. So disheartening.”

Denial of Disability Support Pension

“I received two letters from Centrelink. One letter was denying the Disability Support Pension because my illness isn’t considered permanent and the second letter was denying sickness allowance because my illness isn’t likely to go away within two years, and can’t be considered temporary”.

Mistreatment in the workplace

“Due to existing medical guidelines, I was denied reasonable adjustment by my workplace and threatened with assessment by external medical assessor. I was forced to work during my worst period of illness. Thankfully my GP believed me and could take a month off on leave. I ended up needing the union to represent me. All I wanted was to work two days from home, which is normally a manager’s decision. The Human Resource (HR) person’s own medical bias and bigotry came into play big time; asking about my personal treatment (eg GET, CBT) and that I should be on the ‘return to work’ policy as the HR person expected me to improve.

It was stressful as the external medical assessor could have denied me reasonable adjustment which would have made working impossible.

It definitely led to worsened health. It lowered my baseline of health; I’m absolutely certain that if I’d been permitted reasonable adjustments immediately, I’d have been healthier now and going on. This poor treatment led to my being suicidal, with people checking in on me while I was on the month of sick leave. I felt trapped, demoralised, infantilised, disbelieved.”

How has it affected you? Email ME Australia or leave a comment below.

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Sources:

Medical Board of Australia. 2014. Good medical practice: A code of conduct for doctors in Australia

World Health Organization. 1969. International Classification of Diseases 8th edition. Geneva: World Health Organization.

McEvedy, C. and Beard, A. 1970. Concept of Benign Myalgic Encephalomyelitis. British Medical Journal, Volume 1(5687), pp. 11-15.

Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on Health Select Populations; Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington: National Academies of Press.

Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on Health Select Populations; Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington: National Academies of Press.

Naviaux, R., Naviaux, J., Li, K., Bright, T., Alaynick, W., Wang, L., Baxter, A., Nathan, N., Anderson, W and Gordon, E. 2016. Metabolic features of chronic fatigue syndrome. Proceedings of the National Academy of Sciences of the United States of America, Volume 113 (37), pp. e5472- e5480

Hornig, M., Gottshalk, G., Peterson D., Knox, K. Schultz, A. Eddy, M., Che, X. and Lipkin, W. 2016.Cytokine network analysis of cerebrospinal fluid in myalgic encephalomyelitis/chronic fatigue syndrome. Molecular Psychiatry, Volume 21(2), pp. 261-269.

Nagy-Szakal, D. Barupal, D., Bohyun, L., Che, X., Williams, B., Kahn, E., Ukaigwe, J., Bateman, L. Klimas, N. Komaroff, A., Levine, S., Montoya, J., Peterson, D., Levin, B., Hornig, M., Fiehn, O. and Lipkin, W. 2018. Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics. Scientific Reports, Volume 8(1), p. 10056.

Armstrong, C., McGregor, N., Lewis, D., Butt, H. and Gooley, P. 2015. Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways in chronic fatigue syndrome patients. Metabolomics, Volume 11(6), pp. 1626-1639.

Russell, L., Broderick, G. Taylor, R., Fernandes, H., Harvey, J. Barnes, Z., Smylie, A. Collado, F., Balbin, E., Katz, B., Klimas, N. and Fletcher, M. 2016. Illness progression in chronic fatigue syndrome: a shifting immune baseline. BMC Immunology, Volume 17(1), p. 3.

Tomas, C., Brown, A., Strassheim, V., Elson, J., Newton, J. and Manning, P. 2017. Cellular bioenergetics is impaired in patients with chronic fatigue syndrome. PLOS One, Volume 12(10), p. e0186802.

Petty, R., McCarthy, N., Le Dieu, R. and Kerr, J. 2016. MicroRNAs hsa-miR-99b, hsa-miR-330, hsa-miR- 126 and hsa-miR-30c: Potential Diagnostic Biomarkers in Natural Killer (NK) Cells of Patients with Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalomyelitis (ME). PLOS One, Volume 11(3), p. e0150904.

Cabanas, H., Muraki, K., Easton, N., Balinas, C., Staines, D. and Marshall-Gradisnik, S. 2018. Loss of Transient Receptor Potential Melastatin 3 ion channel function in natural killer cells from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients. Molecular Medicine, Volume 24 (1) p. 44.

Lidbury, B., Kita, B., Lewis, D., Hayward, S., Ludlow, H., Hedger, M. and De Krester, D. 2017. Activin B is a novel biomarker for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) diagnosis: a cross sectional study. Journal of Translational Medicine, Volume 15(1), p.60.

Hardcastle, S., Brenu, E., Johnston, S., Nguyen, T., Huth, T., Ramos, S., Staines, D. and Marshall- Gradisnik, S. 2015. Longitudinal analysis of immune abnormalities in varying severities of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients. Journal of Translation Medicine, Volume 13(1), p.299.

Centers for Disease Control and Prevention, 2018. Treatment of ME/CFS

Agency for Healthcare Research and Quality. 2016. Diagnosis and Treatment of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Systematic Review

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