By David Tuller, DrPH
So I arrived in Melbourne on Wednesday afternoon. Iâ€™ll be in Australia for several weeks for meetings, interviews and general information-gathering. Iâ€™ll post occasionally, but some of the information might be for future blogs and stories. Iâ€™ve conducted a Q-and-A about the general situation in the country with Penelope McMillan, the director of ME/CFS Australia Ltd.
But first, a news flash from the University of Bristol. I have finally heard back about Professor Esther Crawleyâ€™s new positionâ€”as director of the Centre for Child and Adolescent Health, a joint effort between Bristol and the University of West England, effective April 1st, 2018. Hereâ€™s a link to the announcement: http://www.bristol.ac.uk/ccah/news/2018/leadership-change.html
And hereâ€™s the Q-and-A with Penelope McMillan
What is the current situation in Australia?
The outlook is very challenging for many reasons. Our federal governmentâ€™s policies and programs are designed to reject the many disabled people–including those with ME/CFS–who desperately need financial, physical and social supports. Combine that with the limited awareness of ME/CFS among the general population, and lack of training for GPs, medical specialists, allied health practitioners, insurers, financial institutions, lawyers, hospitals, paramedics and utilities companies, and it all puts sufferers at considerable risk of financial hardship and worsening of their baseline levels of functionality.
Our immediate priorities as the national body representing people with ME/CFS are to improve access to the National Disability Insurance Scheme (NDIS), remove GET from clinical practice and NDIS and Disability Support Pension (DSP) policies, develop clinical guidelines, improve clinician training and lobby for increased funding to research. NDIS covers expenses required by people with disabilities toward living a more independent life; DSP provides financial support in the form of pensions.
What name do people use here for the illness?
Thereâ€™s a strong tradition of diagnosing Chronic Fatigue Syndrome over ME or ME/CFS, so the term Chronic Fatigue Syndrome is the name commonly used and recognised by clinicians and the public. Some years ago, advocacy groups chose to use ME/CFS as part of a transition strategy from CFS to ME. The name remains a real problem, with some doctors professing to treat just â€˜chronic fatigueâ€™ or using the two names interchangeably. But â€œchronic fatigueâ€ is very different than the more complex and debilitating permanency of ME/CFS.
Are there clinicians who understand the illness? What kind of medical treatment do people receive?
There are handfuls of integrated GPs, relevant medical specialists and allied health practitioners scattered throughout the country who â€˜getâ€™ the disease. Symptomatic treatments from GPs, specialists and allied health clinicians who understand ME/CFS may include: low dose naltrexone (LDN); IV saline drips; antivirals; antibiotics; low dose beta-blockers; nutritional supplements; recommendations for dietary elimination, FODMAP and ketogenic diets; and undertaking personal pacing or pacing using a heart rate monitor.
What are the general attitudes here towards people with ME?Â How are people treated by families, friends and colleagues?Â
Sufferers have reported being bullied and dismissed by the GPs, specialists and allied health carers such as paramedic and hospital nurses from whom theyâ€™ve sought help. Many of them treat patients as if their condition was psychosomatic. Confusion, lack of training, access to reliable information and lack of money and resources invested in ME/CFS research has helped to underpin a culture where some patients are told their disease is temporary and that recovery back to 100 percent normal functioning is likely.
In tertiary education, the predominant attitude discriminates against students with ME/CFS undertaking professional training as they cannot complete some of their degrees due to inability to fulfil mandatory clinical practice hours or internships. At primary and secondary schools, some schools will not consider or agree to students with ME/CFS using flexible learning or consider them for extensions of time and tasks to be completed at home, to manage their condition. Subsequently, high levels of absenteeism through ME/CFS are common. Absenteeism is recorded for all students and reported to welfare services, so this inflexible and uncaring attitude can result in prosecution for the parents under various state and territory laws, unless distance education is approved.
The attitude of disbelief meted out to ME/CFS sufferers by family and friends has led to relationship breakdowns and divorce, estrangement from parents, siblings and children. In divorce proceedings, attitudes of disbelief by spouses has caused the ME/CFS spouse to be left with reduced payments as determined by the court. The attitudes of uninformed doctors that family and friends may have consulted, plus the predominance of inaccurate information online and elsewhere about how to treat ME/CFS, also influences the friends and families of Australian ME/CFS sufferers to a considerable extent.
Few have been lucky enough to receive support. For the majority, theyâ€™re told theyâ€™re â€œlazyâ€, should â€œget over themselvesâ€, should get outside for some exercise. Theyâ€™re often ostracised by friends and family due to their inherent inability to participate in social activities and family celebrations and functions. Friends and family inevitably let a lot of sufferers â€˜go,â€™ and vice-versa, with sufferers unable to handle the abuse and stress that surrounds attending family gatherings.
Have the PACE trial and the CBT/GET paradigm been influential?
Absolutely. When PACE came out, Michael Sharpe promoted it widely here via ABC Radio. PACE has had a significant influence in Australia, through PACE materials included in the Royal Australian College of GPsâ€™ website.Â Approaches by patients and GPs to have the materials removed from the website have been unsuccessful to date. The CBT/GET requirement pervades Centrelink, the NDIS, the insurance industry, and many GPsâ€™ approaches. PACE is also a major part of the Cochrane reviews for CFS. The Commonwealth Medical Officer confirmed that federal government policy is based on the Cochrane reviews.
What is the situation here for people trying to get social benefits based on their illness?
The situation here is similar to the UK in this respect, and very bleak. The NDIS, DSP and insurance companies continue to insist that a claimant must first undergo CBT/GET. The NDIS developments have been the most disconcerting. Theyâ€™re essentially arguing that the condition is not permanent and likely to be temporary, because CBT/GET â€œimproves the condition and reduces impairmentâ€.
Administrative assessors at Centrelink, which is part of the Department of Human Services, are also suggesting, recommending or requiring CBT and GET for people applying for the DSP as a prerequisite to ensure all potential treatments for the condition have been undertaken. Ironically, Centrelink only requires treatments be undertaken by claimants if it results in â€œsubstantial functional improvement.â€ While PACE doesnâ€™t claim â€œsubstantial improvement,â€ this remains Centrelinkâ€™s stance. Basically, a DSP applicant is required to demonstrate his/her condition is â€œfully treated and stabilised.â€ Centrelink deems that if you havenâ€™t done CBT/GET, you arenâ€™t fully treated.
Itâ€™s a highly stressful situation for all ME/CFS sufferers involved and means that a high proportion of people with ME/CFS lose their homes, jobs, income and live under the poverty line. Many are forced to live in rural areas, due to cheaper housing, but risk lack of access to informed medical support if needed.