Government records falsify disabled people’s access to COVID vaccine

I am fuming! Today, I logged onto MyGov to try to figure out some detail of my NDIS plan. There was a note from Medicare about my complete immunisation certificate. I thought it would be interesting to see what was on it, so I downloaded the file and had a look. When I got to the line that read ‘COVID vaccine’ I did a double take. It said I received my first dose of Astra Zeneca vaccine today. I assure you, I did not.

As a person with a disability, I have known all along I’m especially vulnerable to COVID 19. What wasn’t discussed in the initial health warnings around the disease is that it seems people with disabilities seem to also be vulnerable to the social and economic consequences of the pandemic. In Australia, we were totally excluded from the initial responses and have largely been excluded since. It has been heart breaking.

I self-isolated, keeping myself as safe as possible from the disease, always several steps behind the government advice on what to do to prevent contraction. I feel lucky to live in Canberra, where we’ve been COVID free for months and months and now I don’t feel scared to go out to the shops anymore. But I’ve lost the social connections I had before the pandemic. My friends haven’t come back to visit like they did before. I am so incredibly lonely.

Life became so much harder than it already had been during the pandemic. My condition meant it was already difficult to navigate around the world. But now I had to try even harder to avoid areas with groups of people. Panic buying meant the meagre supplies I usually purchased were gone on the rare occasions I could get out of the house. The medicines I relied on weren’t at the chemist anymore. I had to buy more expensive brands to get access to those I needed. Getting to medical appointments became more expensive too. But there was no relief for the cognitive burden of rearranging all this in my head and the financial burden of trying to figure all this out. People with disabilities were simply invisibilised in the response. No one thought of us, not in the health department, not in treasury, not in the community.

I have a condition called Myalgic Encephalomyelitis (ME), a type of Chronic Fatigue Syndrome (CFS). It is a multi-systemic neurological condition characterised by post exertional malaise that also affects the immune, gastrointestinal and other bodily systems. People often have sensitivity to noise or light, cognitive difficulties, muscle or joint pain, difficulty being upright, temperature dysregulation. I have all these symptoms. Not a great deal is known about ME, they don’t even know what causes it. But they talk about onset factors, one of which is bacterial or viral infection. In my case it was bacterial.

What is interesting is that many so called ‘COVID long haulers’ are actually now being diagnosed with ME, so there’s an interesting relationship between the two conditions. But also, we may now have a growing body of sufficiently newsworthy patients to warrant research money into the treatment and management of the disease. But the relationship between the two diseases also had many ME folks extremely scared of catching COVID and suffering even greater setbacks in their ME. People in our community were also concerned about how each of us would respond to the various vaccines given how unpredictable our immune responses could be. I shared these uncertainties, but I was waiting so long for the vaccine, looking forward to a familiar feeling of confidence after being vaccinated.

When the vaccine rollout was announced in Australia, I was so glad to see people with disabilities would be in phase 1. At first it looked like there may be a possibility of either the Pfizer or the Astra Zeneca vaccine, but it soon seemed that only those in phase 1a would receive the Pfizer and even those with health reasons for wanting one over the other would not have a way to access an alternative. When the details can out for phase 1b it felt like a knife through my heart to read that people with ME/CFS were explicitly excluded from receiving the immunisation during this phase. I was fuming.

People with this condition phase so much discrimination and exclusion. When I first got sick, I was essentially told I was hysterical. It was only after spending months with a clinical psychologist that she asked my GP to refer me to a rheumatologist for the ME/CFS diagnosis. I had to fight for three years to gain access to the NDIS, and a friend was then kicked off again after the court found that she should be given access. That fear lives with me every time I go through a review of my plan. There is a huge amount of stigma in the medical profession. Misdiagnosis and mistreatment abound.

Of what is known, we know this is both an immunocompromising and inflammatory disease (among many other things). It should, therefore, meet the criteria to be on the list for phase 1b on two separate counts. That’s before the social model of disability is considered, which I imagine is why people with schizophrenia, for example, were included on the list of conditions making you eligible for inclusion in phase 1b.

A large number of people with ME were too concerned with how their body would respond to the vaccine to want to get vaccinated. But those who wanted the protection should have been able to have that chance. I was tired of being scared, and tired of having opportunities taken away from me. Tired of being excluded from the response to a disease that posed a greater threat to my (very small) life, than it did to the majority of the population around me. I know a vast number more of healthy, able bodied people who have been vaccinated than I do disabled or vulnerable people.

The Disability Royal Commission recently heard that less than 1000 people in disability residential homes have been vaccinated. There are huge barriers for other people with disabilities to overcome to access the vaccine. This government continues to fail people with disabilities over and over again.

When I opened my MyGov account today to see that Medicare had a false record of my receiving an Astra Zeneca shot for COVID I could have breathed fire. Has someone stolen my identity to try and access their immunisation? Is the government trying to falsify data to make the statistics look better on how many people with disabilities have received immunisations? Because I certainly was given no such help in my battle to protect myself from COVID.

May is ME/CFS Awareness Month. If you would like to know more about this condition. Please visit Emerge Australia.

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Local hero succumbs to skin cancer

Max Hutchinson

Max Hutchinson was a Sydney boy, but he moved to Tasmania when he was 20, married a Burnie girl and never looked back. He fell in love in 1952, built a family and spent a lifetime supporting them and the Tasmanian community.

He spent hours under the sun as a member and Club Captain of the Burnie Surf Lifesaving Club. He was also State Surf Lifesaving Superintendent and was privileged to attend the 1956 Olympics as part of the demonstration team. Later in life, his passion for surf Lifesaving was taken up by several of his grandchildren.

When the family moved to Strahan, Max threw himself into community life of the small town. He was a stringer for the ABC, a Scout master, Captain of the Rural Fire Service and a member of the Strahan Marine Board.

After seeing how painful unamicable divorces can be for children, Max and his wife Beth, helped establish Roland Children’s Services to create contact centres for families going through separations. These centres provided safe places for children and their families to meet while going through problematic separations.

Its possible Max is most widely known for his work with Rotary and the Burnie Agricultural and Pastoral Society. He joined Rotary in 1971, becoming President of the Rotary Club of East Burnie from 1981-1982. He was Assistant District Governor from 1999-2000 and was awarded a Paul Harris fellow. Max has variously been Treasurer, President, Life Member and Patron of the show society since 1971.

Max was a man of faith and contributed to his church community too. He was a regular congregant at, St George’s, the Anglican church in which he was married. During the 1990’s he was a member of the Anglican Church in Tasmania’s Diocesan Council and Treasurer.

In 2008 he was awarded the OAM for services to Burnie through social-welfare, agricultural, service and business organisations.

He led an incredibly fulsome life, packed with adventure and laughter. He travelled around Australia and visited the UK, Europe, New Zealand, Papua New Guinea, Mexico and the USA. There wasn’t much he didn’t have a go at. He even went bungee jumping when he was in his 60’s.

He was an incredibly loving husband, supportive father, proud grandfather and great grandfather. He leaves behind his wife: Beth; three children: Douglas, Richard, Dianne;  grandchildren: David, Susan, Luke, Josh, Tess, Sarah and Emily; great grandchildren: Jordin, Jaylee, Layla, Fray, Koby, Harper, Jasper, and Brody; and his little companion Molly.

Max died from complications from metastatic skin cancer, a reminder of the impact of cumulative exposure to harmful UV rays. His funeral will be held on Thursday 19th March at 2pm at Vincent’s Parklands Chapel, 113 Bass Highway. It will also be livestreamed for those who are unable to attend.

The beauty of Tootsie

Tonight was a very special night for me. I went to the launch of the Kennedy Award, an exhibition of paintings, finalists in a competition with the theme of beauty. The idea was to take the theme beyond the superficial.

It was special night for me, because I was in the exhibition, the subject of a painting over a meter tall painted by the wonderful Marieka Hambledon. Being painted by her was a wonderful experience. I would have loved for us to win. But we didn’t and both of us were overjoyed. We were overjoyed because the painting that won is incredible. It was called ‘Tootsie, just an Old Drag Queen’.

Today was also wear it purple day, an annual awareness day for LGBTQI people. In Australia, young LGBTQI people are five times more likely to attempt suicide and twice as likely to engage I self-harm compared to the general population.

Tootsie, the subject of the winning painting, was 20 years old when he was imprisoned just for being gay. When the judges announced the award, they said you could almost smell the subject. It’s true. Though Tootsie is smoking one cigarette, the artist tells us he was in fact a chain smoker and the haze almost sits in the room with him, with his lipstick smeared coffee cup.

But why we were so happy this painting won over ours is because there is an incredible beauty in Tootsie and his story, so vivid on the canvas, eyeshadow still on his frail skin. There is beauty in this tale that is so different than those on magazine covers or billboards. That beauty is well worth the prestigious Kennedy Award of $25,000. And may that beauty be a lesson to us all.

Australian company arms Saudi government department responsible for gender based violence

This week, the 104 countries that have signed up to the Arms Trade Treaty will be gathering for their annual meeting in Geneva. This year, their discussions will focus on gender-based violence.

Both the ABC and the Guardian recently published photos of shipments of weapons systems from an Australian manufacturer being shipped directly to the government of Saudi Arabia. The weapons systems were sold to the Ministry of Interior, the government department responsible for quashing public dissent and women’s rights.

Picture of a package label departing Sydney Airport.

Label of item for shipping at Sydney International Airport (Photo supplied by Gulf Institute for Democracy and Human Rights)

This sale breeches our obligations under the international Arms Trade Treaty. The Arms Trade Treaty is supposed to stop the sale of weapons to countries responsible for significant human rights breeches.

The Ministry of Interior is in charge of the police, courts and prisons that are all responsible for gender-based violence. They are also largely responsible for implementing the guardianship system that requires women to obtain permission from a male guardian to travel abroad, obtain a passport, or be discharged from prison.

Australian advocates for women’s rights who were at the UN for negotiations of the Arms Trade Treaty were part of the effort include gender provisions in the treaty. The aim of the activists was to help gender based violence by ending the export of the weapons used to facilitate that violence.

Ray Acheson was a leader in those negotiations. She is the Director of the Reaching Critical Will campaign of the Women’s International League for Peace and Freedom. They’ve been working on disarmament issues for over a century.

The legally binding clause of the treaty authorisation of exports must consider if they will “facilitate serious acts of gender-based violence.” Acheson said “Saudi Arabia is a known violator of women’s rights and LGBT rights. The risks of gender based violence inside Saudi Arabia are high.”

Indeed, a 2013 law supposed to reduce domestic abuse still allows male guardians to persistently abuse women. Male relatives are also able to bring legal claims against ‘disobedient’ female dependents who flee domestic violence. Human Rights Watch has documented cases where police have turned women away when they sought to report abuse.

Earlier this year, the male guardianship system returned to the Australian news when Rahaf al-Qunun’s attempted to flee to Australia, escaping her family due to fears for her life. The Ministry of Interior maintains an extensive intelligence network and special police force that has been used to prevent and punish such attempts to break free from the guardianship system.

Over the past twelve months, various elements of the Ministry of Interior have undertaken a campaign of arrests, imprisoning and torturing women’s human rights defenders. Women including Eman Al-Nafjan, Loujain al-Hathloul, Aziza al-Yousef and Samar Badawi were among a dozen leading activists arrested after the ban on women driving was lifted in May last year. Each of them were reportedly tortured while in custody.

The Saudi Arabian public prosecutor’s office had announced that the group undertook “coordinated activity to undermine the security, stability and social peace of the kingdom.” These security related charges could bring sentences of up to 20 years imprisonment. In reality, the women used social media to speak up about women’s rights in the country.

The UN Committee on the Elimination of All Forms of Discrimination against Women has called on the Saudi government to “ensure that women activists are able to exercise their right to freedom of expression and association” and that counter-terrorism law, the anti-cybercrime law and regulations for electronic publishing are not used to “abusively to criminalize women human rights defenders.”

The Australian Government needs to use this opportunity to re-examine its processes for authorising arms exports in accordance with the Arms Trade Treaty.

UN readies for another resolution while Australia stands in the way of ending impunity for wartime rape

The UN Security Council is in the process of developing a new resolution on Women, Peace and Security. The resolution has been anticipated for several months and is due to be passed as part of the Council’s annual open debate on conflict related sexual violence which is due to be held in New York on Tuesday. An Arria formula meeting was held earlier in the year to prepare council members for the debate, with a particular focus on ending impunity for conflict related sexual violence. Conflict related sexual violence is the focus of four of the existing eight resolutions on women, peace and security. But even the Council has bemoaned the lack of prosecutions for these crimes.

Nobel Laureate Nadia Murad will address the Council during the Open Debate. She has spoken out time and again for justice for survivors from her community who experienced sexual violence as war crimes, crimes against humanity and genocide at the hands of Da’esh in Syria and Iraq. For all the times the international community has shone a spotlight on her tears, we have still failed to do what she asks.

Germany, the current President of the Security Council and chair of this week’s debate is the only country to put a member of Da’esh on trial for any of these gendered crimes. But tens of thousands of foreign fighters travelled from countries around the world and committed these crimes. Many of those foreign fighters come from countries that are States Parties to the Rome Statute of the International Criminal Court and are therefore obliged to investigate and prosecute these crimes in their own court systems.

Both houses of Australia’s Federal Parliament passed multi-party motions calling for the investigation and prosecution of Australians who may have perpetrated sexual violence as war crimes, crimes against humanity and genocide. Several federal ministers have reinforced this obligation. These ministers have included Julie Bishop as Foreign Minister, Peter Dutton as Minister for Home Affairs and Linda Reynolds as Assistant Minister for Home Affairs.

Despite this, the government has failed to implement the strategies required to make such investigations and prosecutions are reality and they have invested energy into policies and legislation which prevent such action. Chapter eight of the Commonwealth Criminal Code clearly articulates the crimes that are laid out in the Rome Statute and ensures that Australian authorities have jurisdiction over such offences even when they are perpetrated overseas, against victims from another country. But this legislation has never been tested in court. The Australian Federal Police require the funding and other resources to stand up unit dedicated to such investigations. No such funding was made available in the latest federal budget.

In order for these prosecutions to occur, the perpetrator must be in federal custody. But the government has pursued a range of legislative and policy processes removing this probability. Given the parliament passed legislation allowing the government to revoke the citizenship of anyone who travelled to Iraq or Syria to join Da’esh, the government was obliged to include an administrative step determining if such individuals perpetrated war crimes, crimes against humanity or genocide before making a determination about citizenship revocation. The citizenship review board that advices the Minister for Home Affairs on such matters has apparently continued to fail to account for such obligations. Now, over a dozen individuals, some of whom are known to have perpetrated heinous crimes against women have had their citizenship revoked, further reducing the likelihood that their victims will see the justice they so rightly deserve.

There is a group of Yazidi women who are fighting for access to support services under Australia’s victims of human trafficking schemes. These women were purchased by an Australian man, for the purpose of sexual slavery, and repeatedly sexually and violently abused. Under Australia’s own criminal laws, those women count as victims of human trafficking, modern slavery, war crimes, crimes against humanity and genocide. But rather than allow them justice, the government revoked the citizenship of their abuser. If they so choose, they could bring a case against the Commonwealth for failure to uphold their obligations under the Rome Statute. Their country of residence, or any other country of interest could take Australia to the International Court of Justice for failing to fulfil our obligations under the Convention on the Prevention and Punishment of the Crime of Genocide.

Early in the new year, the government tried to go even further, seeking legislative changes that would allow them to revoke the citizenship of even more people, and enforcing Temporary Exclusion Orders to delay Australians of counter-terrorism interest from re-entering Australia. This is yet another policy that would prevent the arrest or detention of individuals responsible for conflict related sexual violence.

At the Arria formula meeting earlier in the year, civil society presenter Akila Radhakrishnan from the Global Justice Centre said achieving accountability for conflict related sexual violence “requires more than just eloquent rhetoric; it will require Council members to take concrete action and display considerable political will. Sexual and gender-based violence is, at its core, an expression of discrimination, patriarchy and inequality.” Countries like Australia must stop getting in the way of justice and follow up the global rhetoric with the actual action required to end impunity for conflict related sexual violence. We must investigate and prosecute these crimes now!

Greens policy on ME/CFS

The Australian Greens have launched a policy on the debilitating neurological disease myalgic encephalomyelitis, a type of Chronic Fatigue Syndrome known in Australia as ME/CFS. Senator Jordan Steele-John has campaigned passionately for patients with ME since coming to parliament in 2017. This is the first ever political policy to be released on ME/CFS and is well timed with a Federal election due in May.

The Senator was kind enough to call me today to discuss the new policy. After years of campaigning with the hashtag #millionsmissing from their normal lives, the Senator explained this policy was an important way to show the patient community that they were no longer invisible. “When the evidence shows that a disease like this is real, it doesn’t mean that people automatically stop experiencing stigma.” He went on to say this policy was designed to show that it was not just his words that the Greens had to offer ME/CFS patients, but the whole Green movement now had a plan for action to help make their lives better.

The Greens’ policy has four parts. The first is to increase funding for biomedical research to $15 million dollars that would be administered by the National Health and Medical Research Council. This would allow funding for a range of innovative work being done across Australia by a range of different organisations. It would be enough to cover the gap in funding to scale up the sample size of calcium ion channel research being undertaken by the National Centre for Neuroimmunology and Emerging Diseases, as well as a range of other significant biomedical research projects. Since the release of the Greens’ policy, the Coalition Government has announced $3 million dollars in ME/CFS research funding.

Secondly, they propose a national ME/CFS summit to bring together patient advocates, biomedical researchers, clinicians, the National Disability Insurance Agency (NDIA), Department of Human Services, and Department of Social Services. Such an event could be facilitated in such a way that it would catalyse policy alignment between all these groups, with a particular focus on government departments, service providers and medical practitioners. At present, the discrepancies between current research, medical practice, the NDIA and other government departments pose a significant barrier to the health and wellbeing of the hundreds of thousands of Australians who suffer from ME/CFS.

In many cases, patient advocacy groups have been the only source of support and guidance through these frought bureaucratic processes that combine to discriminate against people with ME/CFS. These groups have run on the smell of an oily rag for decades but take a leading role in coordinating communication and advocacy to improve the standard of care for ME/CFS patients. Funding and support of these groups is the third component of the Greens’ policy and it is long overdue.

The fourth component of the policy is a promise to provide participant pathways for people with ME/CFS to access the National Disability Insurance Scheme (NDIS). The NDIS was established with the explicit purpose of supporting Australians with disabilities to access social, economic and community life. Senator Steele-John was infuriated by the revelations that the NDIS had vastly underspent this financial year, but was still failing so many Australians in need of support.

There are a range of reasons given to the scores of people with ME/CFS who are rejected from the scheme. Some reasons relate to outdated research that suggested Cognitive Behaviour Therapy and Graduated Exercise Therapy would make them better; making them ineligible under the criteria of ‘permanence’. Others find themselves caught up in the stigma and misconception of medical professionals who misdiagnose them with Conversion Disorder or Somatic Symptom Disorder. If all the symptoms experienced by a person with ME/CFS are described in either the International Consensus Primer or the Canadian Consensus Criteria, then they will not meet the criteria for Conversion. But approximately 80% of people with ME/CFS are women, who for centuries have had their physical symptoms disregarded as mental illness. In addition to advocacy efforts to have ME/CFS added to List B of the NDIS, Senator Steele-John spoke about aims to continue working with his colleague Senator Rachel Siewert to reform the Administrative Appeals Tribunal to improve its fairness and reasonableness in NDIS appeals. He also spoke about the relationship between the AAT and abusive behaviour towards people with ME/CFS, which may mean it falls in the remit of the Royal Commission into violence and abuse of people with disabilities, the terms of reference for which are due to be finalised before the election.

Senator Steele-John’s efforts to support the ME/CFS community are commendable. It is a source of great hope that he has been able to expand on the good work undertaken by his predecessor Senator Ludlam and bring his entire party on board to work for the improvement of the lives of people living with this debilitating commission. He is facing a tough re-election campaign, facing off against candidates from the One Nation party. We can only hope that the good people of Western Australia get out to support his campaign and vote him back into the Senate in May so he can continue his invaluable work for Australians with disabilities, including those living with ME/CFS.

Pass the snuff and loosen the corsets – they’re back to researching hysteria

Professor Andrew Lloyd is the only advisor to the National Disability Insurance Agency regarding the debilitating neurological disease Myalgic Encephalomyelitis, a type of Chronic Fatigue Syndrome (ME/CFS). A poster for a study being undertaken by his ‘Fatigue Clinic’ at the University of New South Wales asks the sexist question “are women with CFS ovary-reacting?”

ME/CFS is a life altering disease that affects not just the nervous system, but the gastrointestinal, cardiovascular, endocrine, immune and other systems in the body. Up to 240,000 Australians have ME/CFS. It is estimated that a quarter of those are bed or house bound. Others may be able to work but all will have severely affected quality of life. There is currently no known cause or cure for the disease.

Across the country thousands of people with this disease are being refused access to much needed supports through the NDIS, and many more refused access to the Disability Support Pension. These policy decisions are a direct result of Prof Lloyd’s outdated recommendations for patients to undergo Graded Exercise Therapy and Cognitive Behaviour Therapy as curative treatments, or methods of reducing the symptoms of their disease.

However, Graded Exercise Therapy has been shown to be unsafe for people with ME/CFS. Cognitive Behaviour Therapy is a psychological treatment that was first recommended before biological evidence of the disease was discovered. While a very small number of patients has improved with Graded Exercise Therapy, neither treatment has been shown to be statistically effective treatments for the disease defined by the leading international criteria.

ME/CFS effects four times as many women as men. This ratio is the same as autoimmune diseases. The disease has a history (and, all too often, current reality) of sufferers not being believed, misdiagnoses, conflation with psychosomatic diseases and mental illness, and labelling with terms such as hysteria.

Historically, hysteria was a diagnosis given exclusively to women originally described as having wandering wombs, but later to describe high levels of sexual desire, emotional outbursts or nervousness. Not only is hysteria not an actual disease, it’s history as a label men placed on women for exhibiting natural behaviour makes it a touchy subject for modern women who’s health concerns have been disbelieved or downplayed. Even in modern times, the term hysteric is used to describe overly emotional people.

While the relationship between patients menstrual cycle and the severity of their symptoms is an under-researched area, it would be incredibly problematic if the sentiment in the title of the poster for this project permeated the research design. There is a huge amount of poorly designed, unethical, and poorly executed research on this disease and a dire need for high quality biological research. It would be terrible if the University of New South Wales was spending scarce research funding to rekindle outdated views of women’s health.

Research poster at UNSW ‘Fatigue Clinic’

Nadia Murad: small town girl, reluctant hero, Nobel Laureate

Over the years, the Nobel Peace Prize has chosen some doozy candidates, but it remains one of the world’s most preeminent honours. Last weekend, the Norwegian Nobel Committee announced this year’s award would be shared by Nadia Murad and Dr Denis Mukwege. Both these people have fought for years to end sexual violence in armed conflict.

Nadia Murad grew up in a small town in northern Iraq. She dreamed of becoming a teacher or a beautician. But in 2014, her life was torn apart when ISIS forces swept through her village in an effort to kill the men in her community, enslave the women and girls, and convert the boys. Nadia is a member of a small religious and ethnic community. Although they believe in one heavenly God, ISIS believe they are devil worshippers. That day, Nadia was kidnapped, trafficked to Mosul and sold into sexual slavery. She was beaten and brutally gang raped for a month before finally escaping.

As in so many communities, Nadia and women like her who were so brutally assaulted feared the shame of their community. But she bravely stood up and told her story. What happened to Nadia was not her fault. The only person to blame for rape is the rapist. But what Nadia experienced was not just rape, it was part of a campaign to eradicate her community. It was genocide.

As difficult as it can be for survivors to tell their stories, Nadia sat before the United Nations Security Council and told the world what had happened to her. She told them of the pain and suffering she experienced at the hands of ISIS. She told them what they’d done to her whole community.

Since then, she has continued to campaign for justice. She feels her survival obliged her to fight for the rights of persecuted minorities and victims of sexual violence. In a statement after the Nobel announcement, she reiterated that she wanted to see perpetrators of sexual violence in a courtroom, not executed.

But in many ways, she is still beholden to the experience forced upon her. She is still a relatively ordinary young women, wanting to train to be a beautician; but is thrust into the spotlight because of her bravery, and the heinous acts of men from around the world.

After the announcement was made, in a nod to the #metoo movement and the topical Kavanaugh hearings, Nadia said “my hope is that all women who speak about their experience of sexual violence are heard and accepted.”

Nadia Murad at the National Press Club in Washington DC

Nadia is currently working to help rebuild villages that were destroyed in the battle with ISIS. Villages were burned to the ground, there is no medicine or food, and no crops in fields. While the Nobel Prize money, her share will be about half a million US dollars, will be very much appreciated, it won’t go far in the face of such great need. She explained that it costs about $US 20-30,000 to buy back a Yazidi sex slave and estimated there are about 3000 women and girls still held in captivity.

She has now called “on governments to join me in fighting genocide and sexual violence.” The Australian parliament has committed to investigate and prosecute these crimes, but so far has not acted to do so. To do so, they would need to establish and fund a dedicated team to investigate and prosecute our nationals who perpetrated these crimes as well as gather testimony from Yazidis who now call Australia home.

“A single prize and a single person cannot accomplish these goals. We need an international effort.” If all governments undertook such efforts, then, perhaps Nadia will have the prize she truly seeks, justice for her and her community, and a serious step toward ending impunity for conflict related sexual violence.

 

If you’d like to help Nadia’s cause, you can donate to Nadia’s Initiative via squarespace at https://nadiasinitiative.org/donate/

Ford v Kavanaugh

The following is a guest blog post from my friend and human rights campaigner, Daniel Yeow. 

Yesterday’s hearings have never been a clearer message that women’s opinions are worth less than men’s. Ford’s memory was continually questioned, while Kavanaugh’s was not. His belligerence was never called out. Her character was constantly attacked.

A thorough FBI investigation would have, while time-consuming, resolved this in a manner respectful of the truth. The choice by the GOP to turn this into political theatre has turned it into an extremely undignified race to the bottom. What little chance remained that Kavanaugh could credibly claim to be an appropriate candidate for the supreme court has now vanished.

They accuse her of politically motivated false accusations, when statistically it is more likely for a man to be sexually assaulted than to be falsely accused of it. Rushing the confirmation of the candidate, after yesterday’s farce, proves that it is in fact the republicans who are acting out of political motivation – putting party and ideology ahead of country and due process.

Pragmatically, the judiciary committee is pushing to vote to recommend the candidate, which will probably happen. Then the senate has to confirm.

What the GOP needs to realise is that, even though they can ‘win’ with their 51-49 majority, yesterday’s political theatre, paired with Trump’s low approval ratings mean that putting Kavanaugh on the supreme court could spell long-term electoral disaster (and in the short-term, even the possibility for a filibuster-proof 2/3 majority for democrats). Confirming the candidate would be the end of the political careers of many GOP senators. On the other hand, crossing the aisle and voting against the party will, in this insane-mobster political environment, result in similar career-ending repercussions.

So for a decent number of senate republicans, they have to make a decision on what will likely be the last thing they do in their political careers. I can’t predict what they will do, but I hope they at least have a conscience which includes women as equals, despite the strong messaging from others in their party.

P.S. I should probably also add that I believe her and not him. Not that that matters. What people are forgetting is that this isn’t a criminal case. This is essentially a job interview. The question isn’t “did Kav try to rape?”, it is “is this guy appropriate material for the supreme court”, and he clearly isn’t.

Parliamentarians learn about ground-breaking science on debilitating neurological disease

In parliament house in Canberra yesterday, members of federal parliament took the time to listen to world renowned scientists and their ground-breaking findings that explain the debilitating disease myalgic encephalomyelitis, a type of chronic fatigue syndrome. The event focused on a presentation by Griffith University Professors Don Staines and Sonya Marshall-Gradisnik.

The turnout was particularly impressive given the leadership turmoils occupying the headlines and the minds of so many people working in the building. Jokes were made at the beginning and end of the event, confirming that Malcom Turnbull was still the Prime Minister.

The event was hosted by the new Parliamentary Friends of ME/CFS, founded by Greens Senator for Western Australia, Jordon Steele-John and co-chaired by Labor Senator for Queensland, Claire Moore and Liberal Senator for Tasmania Jonathon Duniam.

A range of parliamentarians from across the political spectrum, in both the House of Representatives and the Senate attended, as did policy advisors, members of the academic community, patients and advocates.

Senators Andrew Bartlett, Greens for Queensland; Slade Brockman, Liberal for Western Australia; Jonathon Duniam, Liberal for Tasmania; Jordon Steele-John, Greens for Western Australia; and Claire Moore, Labor for Queensland all attended.

From the House of Representatives, Liberal Member for Dunkley, Chris Crewther; and Labor Member for Canberra, Gai Brodtmann attended. Up to a dozen policy advisors attended from a range of parliamentary officers.

Jordon Steele-John welcomed everyone to the event. Jonathon Duniam introduced the speakers. Don Staines began Griffith’s presentation with some poignant insights into why their research mattered. “It is an honour to present to the representatives of the people, our novel scientific findings” he said. ME/CFS is “a very silent illness, because people are often unable to represent their needs”.

In unpacking the approach of the National Centre for Neuroimmunology and Emerging Diseases, he explained that “the existing science is not yet up to it.” “Patients have experienced extreme stigma and discrimination associated with the lack of known biology”. The aim of the centre’s work was to reduce this stigma by demonstrating the biology of the disease, developing a diagnostic test and identifying therapeutic drugs to manage the disease. He spoke plainly and eloquently for all to understand the gravity of what he was saying.

Sonya Marshall-Gradisnik went through a summary of all the research they have done in three years, explaining what and how they have come to understand the pathology of the disease.

First, they identified a family of genes significantly associated with the disease. Then, they tested these genes, the family of TRPM3 markers, for changes in expression between healthy controls and patients with ME. This gene is found in cells in the central nervous, cardiovascular, digestive, endocrine, immune and excretory and other systems in the body. In this way, they came to understand how so many systems in the body are affected by the disease.

What they found was that the cells containing TRPM3 showed a reduced capacity for the transfer of calcium ions between and within the cells. Calcium ions are vital to cellular energy transfer and proper cell function.

By using gold standard technological processes, they measured the amount of calcium that is stored by and circulated in particular cells. Again, in ME patients, these rates were significantly lower than in healthy controls. This science would explain why many patients describe their experiences as like running on a faulty cellphone battery that doesn’t charge properly and never fully recharges.

TRPM3 are threat receptors. They are triggered by infections (bacterial or viral), perfumes or other chemicals, cell stretching or stress, temperature variation and a range of other factors. This not only explains some of the onset factors for ME, but also some of the triggers patients experience after contracting the disease.

Don Staines explained that, given these findings, we could see that “recommendations to exercise patients are wrong” because it only places greater demand for calcium ions in the cells. This also explains why patients who meet the diagnostic criteria defined in the Canadian Consensus Criteria or the International Consensus Primer would in fact be worsened by a regime of Graduated Exercise Therapy. While patients who experienced the symptom of chronic fatigue without meeting these criteria may experience some improvement.

As for recommendations to treat patients with Cognitive Behaviour Therapy, Sonya Marshall-Gradisnik said she was “not aware of any psychological treatment that can effect calcium ion transmitters”.

Attendees were keen to know what policy makers could do to help researchers and patients. The sample sizes of the studies undertaking so far were about 200 people. To allow all Australian patients to contribute to the study (and vastly increase the value of the science by increasing the sample size), the centre will need $13 million. So far, they have raised half of this money through philanthropic donations. They asked the parliamentarians to support federal government funding for the remaining $6.5 million.

Recommendations also came to ensure government policies and guidelines are updated to account for this research, helping reduce the personal, financial and social burden of the disease on patients. While no specific mention was made of the National Disability Insurance Scheme or Disability Support Pension, ongoing discussions will address some of these issues. There was, however, an explicit call to remove GET and CBT recommendations from policies including guidelines of the Royal Australian College of General Practitioners.

While Don and Sonya were loathe to provide timelines on their advances for diagnostic testing and therapeutic drugs, they explained they were working with a leading Australian pathology service provider with a timeline of three years for both projects.

At the end of proceedings Claire Moore closed the event with a call to action for policy makers while paying tribute to the good work that Scott Ludlum had done in this space. Significant networking between parliamentarians, policy advisors, other researchers and patients occurred before everyone dispersed. Overall, it was an incredibly worthwhile event and impressively successful, especially given the amount of attention being diverted for leadership contentions within the government.