Challenges, concerns and controversies.
The NHMRC Report, 2019, p12
List of issues
- An invisible community: 'Out of sight, out of mind'
- Stigma and disbelief
- Controversial graded exercise therapy (GET)
- Lack of current Australian clinical guidelines
- Lack of training for health professionals
- Access to National Disability Insurance Scheme (NDIS) and Disability Support Pension (DSP)
- Lack of equitable research funding
- Barriers in access to education and employment
- Barriers to health care
- Overlooked in disability access and inclusion
- The situation in Australia
An invisible community: 'Out of sight, out of mind'
I am struggling to think of a cohort of people in our community that large for whom there is so little.
Senator Scott Ludlam, Senate Estimates, 10 February 2016.
Although there are an estimated 250,000 Australians with ME/CFS, there is a misconception that it is a rare disease that does not warrant consideration in policy and practice.
Fewer than 15% of people with ME/CFS are able to work even part-time and 25% are housebound or bedbound, many for decades, yet there is a misconception that this disease simply makes people tired.
Isolation and loneliness are common, as people's social circle diminishes.
Stigma and disbelief
... only half of General Practitioner (GP) respondents believed that ME/CFS was a real condition.
The NHMRC Report, 2019, p12
Use of the name 'Chronic Fatigue Syndrome' has trivialised the illness, which is often confused and conflated with the everyday experience of the symptom, 'chronic fatigue'.
As a consequence:
- misdiagnosis and missed diagnosis are common
- gate-keepers to services and supports often deny access to people with ME/CFS, leading to financial hardship and worsening health
- funders of research and other grants tend to dismiss proposals
- people with ME/CFS are often abandoned by family and friends
Ignorance and disbelief lead to people with ME/CFS being stigmatised as 'lazy' and 'not trying hard enough to get well'.
Controversial graded exercise therapy (GET)
C Monaghan, UK MP, Hansard, 20 Feb 2018
Therapies based on the debunked PACE trial continue to be recommended in Australia, including the Royal Australian College of General Practioners' (RACGP) HANDI guide, despite a US government agency identifying evidence for harm and lack of evidence for effectiveness, as far back as 2016.
The US Centers for Disease Control and Prevention (CDC) no longer recommend this therapy, and the UK National Institute for Health and Care Excellence (NICE) has removed GET from its draft for updated clinical guidelines.
The level of controversy has prompted Cochrane to introduce a new update process, specifically for its review of 'Exercise therapy for chronic fatigue syndrome'.
Lack of current Australian clinical guidelines
There are no current Australian clinical guidelines for ME/CFS. The National Health and Medical Research Council (NHMRC) has recommended development of new guidelines. In the interim, NHMRC has recommended three current international clinical guidelines.
Despite the NHMRC's recommendations, Australian government agencies are still making decisions based on the outdated guidelines from 2002, to the detriment of people with ME/CFS.
Lack of training for health professionals
... approximately 84% of those afflicted with ME/CFS remain undiagnosed and ... those diagnosed waited six years or more to receive a diagnosis.
The NHMRC Report, 2019, p12
The absence of ME/CFS from the education of health professionals has resulted in extensive misdiagnosis and missed diagnosis of this common, disabling condition. Many health professionals feel ill-equipped to care for their ME/CFS patients.
The NHMRC has recommended:
- providing clinicians with ME/CFS health care resources, including clinical guidelines based on the latest research evidence
- developing a clinical pathway within clinical guidelines for ME/CFS management and effective patient support
- collaborating nationally in the dissemination and implementation of clinical resources, including the education of clinicians
Access to the NDIS and DSP
Data obtained through Freedom of Information (FOI) has confirmed that few Australians with ME/CFS apply to the NDIS and of those, the rejection rate is above 60%.
G Hallmann, Chair, ME/CFS Australia Ltd
Australian government agencies are still making decisions based on the outdated clinical guidelines from 2002, to the detriment of people with ME/CFS.
Eligibility frequently requires people with ME/CFS to have undertaken graded exercise therapy (GET), despite evidence that it causes harm.
- NDIS assessors claim that GET improves the condition and reduces impairment. Thus they deem that ME/CFS is a temporary condition, not permanent.
- DSP assessors require that applicants demonstrate that their condition is 'fully treated and stabilised'. Centrelink deems that if you haven’t done GET, you aren’t fully treated.
The situation has not changed since the following segment was produced in 2018.
SBS The Feed: Fighting Disbelief: Chronic Fatigue Syndrome and the NDIS 12:42 mins
People with ME/CFS are therefore deterred from even applying for much-needed NDIS assistance. For those who do apply, the rejection rate is high.
Without access to the NDIS and other disability supports the physical and emotional burden on family carers can also be very high.
Lack of equitable research funding
Until 2019, Australian ME/CFS research was mostly funded by philanthropic trusts, particularly the Mason Foundation, or undertaken by researchers working on a pro bono basis.
Internationally, lack of research funding has hampered progress in clinical guidance. In 2015, the US IOM Report considered more than 9,000 studies of ME/CFS. However, none of them had received adequate funding to include enough participants to allow the research findings to influence clinical practice. Additionally, many studies used diagnostic criteria that included people who did not have ME/CFS, thus limiting the relevance of the findings.
Research funding is still not commensurate with the disease burden. It remains far lower than amounts allocated for research into many conditions that are less debilitating and affect fewer people.
Barriers in access to education and employment
- Consideration should be given to both physical and cognitive challenges posed by the illness, as well as illness severity.
- Accommodations could include, for example, extra time, rest breaks, sensory accommodations (audio versions of written materials, low noise and light in the environment), or the opportunity to lie down, and should be guided by patient need.
The NHMRC Report, 2019, p14
Lack of understanding of the nature and impact of ME/CFS has meant that the needs of students and employees, such as flexible conditions, extensions of time for deadlines, mandatory components of course work and working from home, have been denied.
Fewer than 15% of people with ME/CFS are able to undertake paid work, even part-time. Children and adolescents experience similar levels of difficulty with attendance and participation in schooling. School absenteism may be reported to welfare services, resulting in prosecution of parents.
In a welcome change, the pandemic has supported people studying and working from home, in ways that have been denied to people with disabilities in the past. However, the majority of people with ME/CFS will not have the capacity for formal study or paid employment.
Barriers to health care
- Other barriers to accessing clinical care ... included hypersensitivities to light, sound and smell, and difficulty finding a place to lie down to help manage orthostatic intolerance during a clinical appointment.
- Housebound, bedbound and rural patients have reported difficulties in accessing healthcare services, further impeding effective care.
The NHMRC Report, 2019, p12
Health services, in both primary healthcare and hospitals, do not provide for the needs of people with ME/CFS. Protocols for access and inclusion do not include adequate provisions for environmental sensitivities (e.g. noise, light), orthostatic intolerance (OI), and multiple chemical sensitivity (MCS). Many patients report that they avoid seeking medical help, because they know from experience that doing so will exacerbate their illness.
There is no continuity of medical care for people who are unable to leave their home to attend appointments. Due to the pandemic, univeral access to telehealth was introduced, addressing the desperate and immediate need of the 25% of people with ME/CFS who are housebound or bedbound. When universal access to telehealth was withdrawn in July 2020, countless Australians became invisible again in the eyes of the health system. ME/CFS SA is now partnering in research on the healthcare needs of housebound Australians.
ME/CFS SA is concerned that governments are making policies without identifying how many vulnerable Australians are housebound due to physical or mental ill health, injury or frailty, and thus have no access to ongoing primary and secondary healthcare. An estimated 60,000 Australians with ME/CFS fall into this category.
Overlooked in disability access and inclusion
South Australian state and local government departments and agencies are required under legislation to develop access and inclusion plans for people with disabilities. Except for wheelchair access, the needs of people with ME/CFS are overlooked in access and inclusion plans, even though these needs are not unique to our community.
The situation in Australia
In March 2018, David Tuller, a US public health academic and investigative journalist, interviewed Penelope McMillan, South Australia's representative on the board of ME/CFS Australia. Many of the issues discussed remain relevant today.
Last edited: 28 January, 2021