Welcome to Australia

About Alem Matthees, the Australian National Disability Insurance Scheme, prof. Andrew Lloyd – the Australian equivalent of among others Prof. Michael Sharpe – & the aftermath of the PACE-trial.

Sections taken from an article in ABC’s Medium by Amanda Francey

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.

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 Other countries had withdrawn graded exercise therapy (GET) and cognitive behavioural therapy (CBT) from their ME/CFS guidelines due to the potential detrimental outcomes to patients.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patients, Australian health professionals and the National Disability Insurance Scheme (NDIS) continue to endorse these outdated and damaging treatments, further compounding the suffering.

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.

The PACE trial and its aftermath

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).

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 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.

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.

Back to Alem

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.

Source: ABC Medium

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