Australia: News from Emerge Australia
- Thread starter Andy
- Start date
Dolphin
Senior Member (Voting Rights)
From Facebook
We recently submitted to Australia’s national healthcare safety and quality standards consultation.
We called for health-related stigma to be clearly named and addressed in the new standards.
People with ME/CFS and long COVID are too often disbelieved, have their symptoms minimised or psychologised, or receive advice that does not recognise post-exertional malaise (PEM).
This can lead to harmful care, worsening health and people avoiding healthcare altogether.
We asked for health services to:
• train healthcare workers in stigma-informed care
• listen to patients and take their experiences seriously
• measure whether people feel believed and safe
• work with affected communities to improve care.
Safe, high-quality healthcare must be free from stigma.
You can read our submission here: https://zurl.co/aisYP
We recently submitted to Australia’s national healthcare safety and quality standards consultation.
We called for health-related stigma to be clearly named and addressed in the new standards.
People with ME/CFS and long COVID are too often disbelieved, have their symptoms minimised or psychologised, or receive advice that does not recognise post-exertional malaise (PEM).
This can lead to harmful care, worsening health and people avoiding healthcare altogether.
We asked for health services to:
• train healthcare workers in stigma-informed care
• listen to patients and take their experiences seriously
• measure whether people feel believed and safe
• work with affected communities to improve care.
Safe, high-quality healthcare must be free from stigma.
You can read our submission here: https://zurl.co/aisYP
Dolphin
Senior Member (Voting Rights)
MissingSchool Q&A Recording
Emerge Australia recently hosted an information and question-and-answer session with Megan Gilmour, co-founder and CEO of MissingSchool. The session explored practical ways families and schools can work together to support children and young people living with ME/CFS or long COVID who require reasonable adjustments and/or miss school often or for prolonged periods.
Attendees had the opportunity to ask questions and learn more about supporting students to remain connected to education.
About MissingSchool
MissingSchool is a national organisation that supports children who are unable to attend school due to complex conditions or circumstances. It works with students, families, schools and healthcare professionals through resources, training, advocacy and innovative technology to help students stay connected to learning and their school community.
WATCH THE RECORDING
Emerge Australia recently hosted an information and question-and-answer session with Megan Gilmour, co-founder and CEO of MissingSchool. The session explored practical ways families and schools can work together to support children and young people living with ME/CFS or long COVID who require reasonable adjustments and/or miss school often or for prolonged periods.
Attendees had the opportunity to ask questions and learn more about supporting students to remain connected to education.
About MissingSchool
MissingSchool is a national organisation that supports children who are unable to attend school due to complex conditions or circumstances. It works with students, families, schools and healthcare professionals through resources, training, advocacy and innovative technology to help students stay connected to learning and their school community.
WATCH THE RECORDING
Dolphin
Senior Member (Voting Rights)
From Emerge Australia:
October International Research and Advocacy Roundup
Our International Roundup provides a brief snapshot of some of the ME/CFS and long COVID research funding, clinical care and advocacy actions around the world. In the last few months topics include;
The Austrian WE&ME Foundation, established by the Ströck family who have been affected by ME/CFS, announced funding for 7 research projects investigating the biological mechanisms of ME/CFS. Each project must include meaningful engagement with people with ME/CFS. The funding is €120,000 to €180,000 per project.
Open Medicine Foundation held the 10th Annual Symposium on the Molecular Basis of ME/CFS in the US in September. Speakers included Ron Davis, Chris Armstrong, Todd Davenport, Carmen Scheibenbogen, Robert Phair and Nancy Klimas. Recordings are available.
The Science for ME forum collaborated with Professor Jonathan Edwards to produce a fact sheet about the management of severe and very severe ME/CFS. The fact sheet covers medical care, care at home, disability assessment, preventing deterioration and nutritional support, including tube feeding.
Action for ME and the 25% ME Group produced the Severe ME Report, exposing the reality facing people with severe and very severe ME/CFS in the UK. The report calls for urgent action to ensure safe and equitable access to life-sustaining care.
A petition is calling for a Canadian study into the Lightning Process for long COVID to stop. The petition asks for participant recruitment to stop until an independent review of the study has been completed. The petition is still open.
READ THE FULL ROUNDUP
October International Research and Advocacy Roundup
Our International Roundup provides a brief snapshot of some of the ME/CFS and long COVID research funding, clinical care and advocacy actions around the world. In the last few months topics include;
The Austrian WE&ME Foundation, established by the Ströck family who have been affected by ME/CFS, announced funding for 7 research projects investigating the biological mechanisms of ME/CFS. Each project must include meaningful engagement with people with ME/CFS. The funding is €120,000 to €180,000 per project.
Open Medicine Foundation held the 10th Annual Symposium on the Molecular Basis of ME/CFS in the US in September. Speakers included Ron Davis, Chris Armstrong, Todd Davenport, Carmen Scheibenbogen, Robert Phair and Nancy Klimas. Recordings are available.
The Science for ME forum collaborated with Professor Jonathan Edwards to produce a fact sheet about the management of severe and very severe ME/CFS. The fact sheet covers medical care, care at home, disability assessment, preventing deterioration and nutritional support, including tube feeding.
Action for ME and the 25% ME Group produced the Severe ME Report, exposing the reality facing people with severe and very severe ME/CFS in the UK. The report calls for urgent action to ensure safe and equitable access to life-sustaining care.
A petition is calling for a Canadian study into the Lightning Process for long COVID to stop. The petition asks for participant recruitment to stop until an independent review of the study has been completed. The petition is still open.
READ THE FULL ROUNDUP