Australians Abandoned by Healthcare, Sentenced to “Living Death”
Outdated health guidelines and medical fallacies have left thousands of patients neglected and marginalised.
For seven years, Alem Matthees from Western Australia has remained confined to his dark, soundproof bedroom, too ill to read, watch TV, or socialise online. His body lacks energy to the extent that even short interaction with family members can deteriorate his health. Bedridden, he can only manage brief periods of sitting to consume a liquid meal or use a commode.
Alem’s isolation and grim reality are mirrored by up to 60,000 Australians afflicted by severe myalgic encephalomyelitis, commonly known as chronic fatigue syndrome in Australia. ME/CFS is the preferred term among researchers and charities.
Over 70% of ME/CFS patients report sudden onset after a viral or bacterial infection, and patients and researchers predicted early on in the pandemic that a tsunami of post-COVID-19 sequelae would follow. Studies suggest nearly 50% of long COVID patients are meeting the criteria for ME/CFS.
ME/CFS is conservatively estimated to affect approximately 0.4–1.0% of the global population, indicating that as many as 250,000 Australians could be impacted. This number may rise substantially due to the pandemic. One-quarter of ME/CFS patients suffer from a severe form of the disease, being confined to their homes or beds, with many likening their existence to a “living death.” Their quality of life scores lower than multiple sclerosis and is comparable to the final weeks of having a terminal illness.
“They feel effectively the same every day as an AIDS patient feels two months before death, the only difference is that the symptoms can go on for never-ending decades.”
– Professor Mark Loveless, Head of AIDS and ME/CFS Clinic at Oregon Health Science University
The suicide risk among ME/CFS patients is nearly seven times that of the general population. Factors associated with this alarming statistic include: being told the illness is psychosomatic, extremely poor quality of life, no effective treatments, social isolation and not being understood by others.
ME/CFS research funding in Australia is strikingly low at just $6 per patient, a sharp contrast with the substantial funding for diseases like motor neurone disease and multiple scleroses. This discrepancy is particularly alarming given ME/CFS’s estimated $14.5 billion economic burden on Australia, mainly from income losses (70%), direct expenditures (24%), and collective burdens on the government and healthcare system (6%). Consequently, ME/CFS patients often face healthcare abandonment, disability and insurance support rejection, and are at risk of harm from government-sponsored medical malpractice.
ME/CFS researcher, Professor Sonya Marshall Gradisnik from Griffith University told ABC News that Australia’s decades old treatment guidelines failed to reflect scientific advances in the pathology. Other countries had withdrawn graded exercise therapy (GET) and cognitive behavioural therapy (CBT) from their ME/CFS guidelines due to the potential detrimental outcomes to patients.
Despite international recognition of the potential harm of these therapies to ME/CFS patients, including a subset of Long COVID patients, Australian health professionals and the National Disability Insurance Scheme (NDIS) continue to endorse these outdated and damaging treatments, further compounding the suffering.
The use of the outdated Fukuda case definition in the Australian guidelines is concerning as it doesn’t mandate key symptoms like post-exertional malaise (PEM) and neurocognitive signs, potentially leading to over-diagnosis. A recent study demonstrated this by identifying enlarged brainstems in ME/CFS patients meeting the International Consensus Criteria (ICC). The study categorised patients into ICC and Fukuda groups, revealing significant differences in brain structure only in the ICC group, while no such differences were observed in the Fukuda group or healthy controls. This emphasises the necessity of criteria mandating both PEM and neurocognitive signs for research and diagnosis.
Post-exertional malaise (PEM) is a defining feature of ME/CFS, it is not fatigue but a quantifiable neuroinflammatory response and breakdown within the body’s energy system, which can be triggered by minor physical or cognitive exertion such as showering or even having a conversation. Advancing research confirms the presence of diverse biological abnormalities spanning various body systems, including neurological, immunological, gastrointestinal, metabolic, mitochondrial as well as cardiovascular and cardiopulmonary.
Undeterred by the wealth of objective evidence documenting complex systemic irregularities, Professor Andrew Lloyd, Australia’s appointed advisor, asserts ME/CFS is exclusively a subjective condition. In 2014, Lloyd promoted his therapies by citing the UK’s controversial PACE Trial as having “reasonably strong” evidence for graded exercise therapy (GET) and cognitive behavioural therapy (CBT).
During an SBS Insight program in 2018, Lloyd suggested educating the medical community on delivering therapies such as GET and CBT might be “money better spent” than updating the 2002 guidelines, which he coauthored.
Professor Lloyd founded and directs the UNSW fatigue clinic since 2007, delivering GET and CBT interventions for ME/CFS patients. He serves on the advisory panel for Post-Acute Sequelae of COVID-19 (PASC), and is a research co-leader for Insights into long COVID. Lloyd is also the advisor to the National Disability Insurance Scheme (NDIS) on processes for assessment of applications to the scheme from ME/CFS patients. An unpaid role, or so it’s claimed.
An NDIS freedom of information request by Call for Change ME Patients in Australia revealed that the Technical Advisory Team (TAT), a national unit within the National Disability Insurance Agency (NDIA), sought a specialist medical report from Professor Lloyd in February 2018 to aid in understanding ME/CFS for participants applying to access the scheme. The Agency also requested Lloyd’s fee estimate for this report. In response, Lloyd referenced an ongoing project, proposing just under $100,000 from the NDIA to fund an education program for government agencies assessing ME/CFS. Lloyd has additionally provided advice for Centrelink and various insurance schemes, particularly on income protection insurance.
Following Alem’s completion of GET/CBT, requested by Centrelink before he was able to go on the Disability Support Pension, his health took a noticeable decline. This led him to raise doubts about the effectiveness of these therapeutic interventions which were promoted as “evidence based” treatments by the PACE Trial authors and Professor Lloyd.
The PACE Trial — “Greatest medical scandal of the 21st century”
The most expensive and influential ME/CFS research, costing £5 million, was based on poor science and deception. It is crucial to observe that the PACE Trial was part-funded by the UK’s Department for Work and Pensions (DWP).
“This will emerge as one of the greatest medical scandals of the 21st century — A trial which claimed exercise helped the estimated 250,000 sufferers of the devastating illness, M.E. to recover was deliberately flawed to remove people from long-term benefits and reduce the welfare bill”.
– Carol Monaghan, MP, during a parliamentary debate in Westminster.
Alem’s health was quite poor when he submitted a freedom of information request to Queen Mary University of London in March 2014 to release the PACE Trial data. His request was denied, and this refusal was not unique, as more than 30 other FOI requests from various parts of the world were also turned down. Subsequently, the university allocated a substantial sum of £250,000 pounds (equivalent to approximately $476,000 Australian dollars) to contest Alem’s more formal requests in the courts to keep the data closed. Eventually, in August 2016, the courts ruled in Alem’s favour. After reanalysis of the raw data, over a hundred researchers, scientists, professors and doctors signed an open letter criticising the deep flaws in the PACE Trial.
Upon reevaluation, methodology flaws were identified, including the alteration of patient recovery thresholds, leading to the misclassification of still-ill patients as recovered. Analysis unveiled a lower recovery rate of 3 to 7 percent, contrasting the initially claimed 22 percent. Critics also highlighted issues with the utilisation of the broader Oxford criteria capturing patients without ME/CFS. Furthermore, investigators tainted the results by promoting their therapy as successful to the study participants.
After the comprehensive reanalysis discredited GET and CBT research from the PACE Trial and Cochrane Review, there has been a significant shift in the international approach to ME/CFS, moving away from the old psychosocial doctrine towards a more biomedical perspective.
Both the US Centers of Disease Control (CDC) and the UK National Institute for Health and Care Excellence (NICE) have adapted their guidelines to reflect evolving understanding, notably by removing GET in 2017 and 2021, respectively. Similarly, New Zealand revised their guidelines in 2023, highlighting three treatments to avoid: CBT, GET, and the contentious Lightning Process.
However, Pro-GET/CBT proponents resist biomedical science advances challenging their long-held belief to which they’ve devoted their careers. An opinion piece critiquing the revised NICE guidelines has influenced dupable journalists and uninformed medical professional bodies. However, the most conspicuous anomaly appears to be the critiquing authors’ remarkably extensive list of competing interests. NICE has since responded debunking the critics’ claims.
In a related development, the FOI request by Call for Change ME Patients in Australia revealed that the NDIS is asking ME/CFS participants to provide evidence of undertaking GET/CBT treatment to assist with making a decision about the permanence of their condition. While the Agency states they accept the new NICE guidelines, it cites this statement, likely influenced by the opinion piece, in what appears to be their defence for pushing GET and CBT on participants.
Brian Hughes, Professor of Psychology at the University of Galway, delivered a presentation in which he thoroughly examines the myths — or perceived anomalies — and addresses the prevalence of misinformation in the context of the new NICE guideline.
Today, Alem is too weak to change his clothes and allows his mother, Helen, to help him when he can tolerate it. They’ve had to develop their own sign language as he no longer has the strength to scribble on a note pad. I asked Helen how she felt about Alem’s future, and her response was despairing.
“I feel sick when I think of what will happen to Alem if I was not around. I’m nearly 70, his father is in his 70s and Alem requires around the clock care. My day starts with Alem at 5am and does not finish until 11pm.”
Alem’s story is emblematic of thousands suffering from ME/CFS, emphasising the urgent need for change. The history of ME/CFS reflects misclassification and stigma, with outdated treatments compounding patients’ suffering.
Deaths by suicide or as a direct consequence of very severe ME/CFS would be preventable if doctors and hospitals were educated in managing their condition to avert decline. Patients being persuaded to do more, exceeding their energy capacity over and over, is a certain path to deterioration.
With the rising tide of long COVID cases potentially leading to more ME/CFS diagnoses, addressing these issues is more urgent than ever. Nominating a more qualified advisor, increasing funding, revising guidelines, and prioritising education for healthcare professionals are essential steps towards addressing this complex condition and improving the lives of those affected.
