Australia’s government and services have continued to endanger a severe myalgic encephalomyelitis (ME) patient trapped in an abusive household. There, her abusers have now repeatedly infected her with Covid – while gaslighting her and withholding care, creating the perfect storm for her health to deteriorate further.
The Canary first highlighted Anna’s appalling story in May 2024. However, since then, things have only gotten worse. Anna’s situation was already dire, but now, it has become inordinately more urgent that she finds a safe home away from her abusers. This is because every day that goes by that she remains trapped under the same roof, they continue to put her life at greater risk.
Severe ME: more than 20 years of a devastating disease
Anna is based in Melbourne and has lived with ME for over 20 years.
ME is a chronic systemic neuroimmune disease. It affects nearly every system in the body and causes a multitude of debilitating symptoms.
Crucially, post-exertional-malaise (PEM) is the hallmark symptom of ME, which entails a disproportionate worsening of many of these symptoms after even minimal physical or mental activities.
Like many living with ME, Anna also deals with a number of other serious chronic illnesses. These include endometriosis, hypothyroidism, postural orthostatic tachycardia syndrome (POTS), and adrenal disease, among others. And for Anna, long Covid has also compounded her condition.
Contracting Covid-19 in May 2020 and then again in 2022 caused a relapse in her ME/CFS, essentially worsening her condition. In March 2024, family members once again exposed her to the virus. Consequently, Anna currently lives at the severe end of the disease’s scale.
At least 25% of people live with severe ME. In these cases, people living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.
Still trapped in domestic abuse eleven months on
All the while Anna has been enormously sick and disabled with severe ME, she has also been trapped in a household where family members abuse and neglect her.
As the Canary previously wrote:
Anna told the Canary that her domestic abuser regularly neglects her nutritional needs – sometimes leaving her for days without food.
On top of this, during the height of Australia’s blistering summer heat between December and February, Anna’s abuser refused her air conditioning. Like many living with ME/CFS, Anna experiences autonomic dysfunction – known as dysautonomia – which can affect blood pressure, heart rate, digestion, and body temperature. So, as Melbourne’s temperatures soared, Anna was left to suffer the impacts this had on her already horrendous health.
Then, at the end of March, another abusive family member forced a visit on Anna. The family member’s stay ramped up the over-stimulating environment, triggering Anna’s PEM.
This was when a family member caused Anna to contract Covid in March 2024. And predictably, her family’s abuse has only continued. In November, Anna told the Canary that her family had once again exposed her to a Covid infection. At the same time, the abusive family member that previously visited and gave her Covid – her sister – moved in next door.
Anna reached out to the Canary over Christmas. Her family was once again putting her health at risk. In particular, while they were all sick, they were refusing to mask to mitigate the risk of her getting infected. She shared a letter with us from her GP with a list of precautions care-givers and healthcare staff would need to implement to keep her safe. This advised that:
Ongoing measures should be taken to protect [Anna] from future serious infections including Covid-19 including
- People wearing N95 masks when in the same room as [Anna] (including when asymptomatic) to minimise passing on any respiratory infections
- People who are in regular contact with [Anna] are encouraged to wear N95 masks when in public, to minimise risk of bringing community-based infections into the house
- It is recommended that all household members regularly use RATs to monitor for Covid-19 and influenza infections to identify early and asymptomatic infections
And despite the letter detailing her specific dietary and environmental needs to keep her severe ME as stable as possible, her family have continued to ignore all this.
Things only getting worse
Anna told the Canary in March that her family have only continued ramping up the abuse and neglect. She explained that:
There are mould problems, dust problems, father remodel shower without thought for me
Crucially, he’d paid no attention to her needs as person living with severe ME, POTS, and MCAS:
I have been debited shower chair to sit that I offered to pay for he won’t allow on top of hand held shower hose and filter for MCAS and dust filter for central heating he refuses to have cleaned.
Her council wanted to fix the shower because the set-up is dangerous for her, having hit her head on the side of the bath multiple times. However, her father had also refused to facilitate this. To make matters worse, he has been withholding her shower chair she needs to shower safely due to PEM and POTS. Anna expressed how this compounding abuse is mounting up to put her life in real danger:
My doctor says if they keep doing all this they will kill me.
All the while, Anna’s sister has also been exacting coercive control over her health affairs.
In the past month, her sister has been trying to access confidential details about Anna’s ongoing court case to access Australia’s main disability welfare programme, the National Disability Insurance Scheme (NDIS). Anna explained that:
She [had] the gall to call my Dr and I don’t know who else so I’m having to go to the trouble of contacting everyone to make sure there’s no leaks and having my case made anonymous and under an unsearchable pseudonym
Domestic abuse services failing disabled people like Anna
In January, Anna posted more about the circumstances she is persistently facing in an abusive household:
Yesterday half hour crawling on the floor bc I couldn’t stand being screamed at by sister (moved next door) & called every name under the sun telling me she’s going to run things. Dad backed her up. Called me shameful. Said I should leave. Nowhere to go. Is not safe. Help me
— Anna (needs a safe home) (@halcionandon) January 16, 2025
I’m not getting regular food & my father is selling/giving away my stuff whenever I’m not well enough to hide it.
They’ve been told by specialists to mask & I need regular food but they don’t listen. #DontletMEDie
Someone help me.🥺🙏#SevereME #MECFS #pwLC #pwME#Abuse #Neglect pic.twitter.com/RRxxRsZP6b— Anna (needs a safe home) (@halcionandon) December 23, 2024
However, the problem is, Anna still has no way out. As the Canary detailed before, there are no options available to Anna through the usual domestic violence refuge channels. We wrote how:
When Anna has sought help at Australia’s domestic abuse shelters, she has found they have no provision available for disabled survivors of violence. This is because women’s refuge services are generally under-equipped to address the care needs of disabled people. On top of this, services do not typically design them with accessibility in mind.
In short, domestic violence services can’t – and won’t – help Anna because she is disabled. We previously noted how the lack of services was driving Anna to call for help from anyone in Melbourne who could spare her a room and some care. Specifically, we said that:
Given decades of the Australian state and services failing people living with ME/CFS, change isn’t going to come from within. For that reason, Anna mused to the Canary how she hoped someone would take her in.
However, it’s a damning indictment when one of the wealthiest countries on the planet places a chronically ill woman at the mercy of medically unqualified, albeit well-meaning strangers for care – and without assurance for her safety.
Now though, it is literally coming to this since the Victorian state and Melbourne-based domestic abuse services are still shamefully failing her:
Need quiet room in (house?) to live Melbourne. Covid/infection conscious so masking please (letter from Dr).
Need some care but can provide meals & some care hours, Can pay some rent &
If works out longer term they could get Carer Allowance &/or Payment.https://t.co/DKnASpOGwY— Anna (needs a safe home) (@halcionandon) December 25, 2024
No NDIS, no disability advocate, no help anywhere
Similarly, Anna has explained to the Canary previously that living in a poor suburb of Melbourne has left her without options for in-person disability advocacy services as well. She told us how:
I’ve tried them all. Problem is they either don’t work in my catchment or only with NDIS support.
So, the lack of disability advocacy services in her area has left Anna to fight for herself, despite being extremely sick with severe ME.
Moreover, as she noted, many of the disability advocacy services she has contacted will only support those accessing Australia’s disability welfare, the National Disability Insurance Scheme (NDIS). However, here’s the thing: the government overwhelmingly rejects applications from people living with ME. As the Canary highlighted before:
as of 30 June 2023, the rejection rate for people living with ME/CFS stood at 64% of those who have applied
What’s more, we calculated that on the basis of even low-end conservative estimates for the number of people living with severe ME in Australia:
just 0.3% of the people living with severe ME/CFS are currently accessing the NDIS.
Unsurprisingly then, Anna hasn’t been able to get NDIS either. She explained to the Canary that after the government National Disability Insurance Agency (NDIA) initially rejected her application, she had to appeal this in court:
I’d be resting as needed if didn’t have search for housing and NDIS application messed up so gone to court I’m back working on NDIS mid January because have no disability advocate but have charity legal representation. I don’t know if I can do it with no help.
Anna summed up that a huge barrier is the huge amounts of documented health records and evidence the NDIA requires. For Anna, not only is the process of gathering this putting an immense strain on her health, but there are other issues even obtaining the evidence she needs. She expressed that:
Well my father threw out the records I was keeping at home and most of my records disappeared when my deceased doctor clinic shut down. He wrote a summary of ever consult. That would be proof. So I have to do more work to dig up info and may still be rejected after 18 months of work.
And to make matters worse, to get the NDIS, Anna explained how they require applicants to provide:
proof you tried available treatments and they didn’t work… even if there is no treatment.
Notably, the NDIA has built engaging with outdated and harmful treatments like Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) into its criteria. Of course, this is hugely problematic – not least because these could cause Anna’s severe ME to worsen even further. Medical professionals have forced Anna into both since she developed ME. It’s highly likely they contributed to her deterioration into severe ME:
I will be rejected for sure without this.
It’s al just pointless busy work pointing out what doesn’t work (nothing) when I really need to show there is no treatment (especially CBT/GET) which I tried years ago & of course it didn’t work. Being so young is only reason I survived
— Anna (needs a safe home) (@halcionandon) December 16, 2024
Glacial pace of change putting Anna’s life at risk – but people can help
Close to a year after the Canary first reported on Anna’s atrocious situation, little has changed.
As ever, the only people who’ve reached out to help Anna are chronically ill people, often themselves living with ME, or long Covid. Notably, people online have been sharing her story and setting out Anna’s urgent needs. These are:
- A room in a quiet home with Covid conscious masking. Anna has explained that she can pay rent, but she will need some care assistance. She has already qualified for funding support for this, so can provide for meals and some care hours. There’s a prospect of Carer’s Allowance if the person can assist her long-term.
- Once she has secured a room in a safe home, she will need a way to move safely, with consideration for her severe ME and mitigating infection risk in the process.
- She’ll also need funding for moving costs, and aids until she has access to the NDIS.
- Alongside all this, she needs a disability advocate with experience of complex cases who can assist her in tandem.
- Separately, she is looking for someone in Australia, preferably in Victoria, to help do verbal communication tasks. Anna has everything they would require documented, so just needs someone to sit on the phone.
It’s shameful that a person living with severe ME in a wealthy and enormously-resourced country can count on neither the state or specialist services to help her get care, and leave an abusive household. Change for people living with ME continues to move at a glacial pace – but people like Anna can’t wait for it – because by now, it’s already too little, too late.
In the meantime, if you want to support Anna financially as she prepares to build a life away from abuse and are in a position to do so, her international crowd-funder can be found here. If you live in Australia you can send support to @halcionandon through Beem. Anna would be especially grateful for gift-cards through Amazon (to [email protected]) or Beem, to afford basics.
Featured image via the Canary
