Millions of Australians live with a disability, but dental care remains out of reach for many abc.net.au/news/2023-03-1…

“Left without food, and only allowed access to a sliver of her disability pension, Rachael* describes her short stint under the care of a self-funding, independently operated government institution as a nightmare.” abc.net.au/news/2023-04-1… via ABC Australia

GP bulk-billing rates have dropped across Australia, leaving patients like Julie in the lurch abc.net.au/news/2023-04-1… via ABC Australia

Hope for COVID-19 patients who've lost their sense of smell: Mayo Clinic youtu.be/HjVi9B7L-j0

New Video: Post Exertional Malaise is the hallmark symptom of #MECFS and is also common in #LongCovid. Video explains the abnormal response to exertion, triggers, symptoms and management.

May is Myalgic Encephalomyelitis Awareness Month. If you’ve never heard of it, please look it up. I’ve suffered for 23 years with this illness. #MyalgicEncephalomyelitis #ME 💙

25% of #ME patients are bedbound, can’t walk and can’t take care of themselves. 75% are mostly housebound and can’t work. Most struggle with socialising. Scientists say #MECFS has been triggered in about half of #LongCovid cases. No treatment no cure. #MyalgicEncephalomyelitis

[TW: story about severe ME/CFS] Some time ago, a person with severe #MECFS requested that I visit with them. It has been a while since I was there and I’m still working through everything I heard and saw that day. This person had been unwell for many years and their (1/)

I'm one of millions missing from our lives due to Myalgic Encephalomyelitis, each with their own challenges and losses. Unlike Covid lockdowns, the lockdowns we have dealt with for years due to #ME continue #MEcfs #CFS #MyalgicE #PwME #May12 #May12th #ChronicFatigueSyndrome

For Refinery29 Australia I look at how ppl with marginalised disabilities are cut-off from accessing healthcare and, as a result, disability support. "As I cast around for help, I realised that the help I needed didn’t exist. At least, not for someone like me." refinery29.com/en-au/ndis-acc…

Natalia Refinery29 Australia This short video about being homebound concludes, "They deserve to be highlighted and included like the rest of us." vimeo.com/518436742?embe…

An Australian professor recognised as a world expert in ME/CFS — chronic fatigue syndrome — says Australia's treatment guidelines failed to reflect scientific advances in the pathology of the illness. abc.net.au/news/2023-06-1…

Today's aged care falls well short of how we'd like to be treated – but there is another way theconversation.com/todays-aged-ca… via The Conversation - Australia + New Zealand

Working with a #LongCovid patient who just isn’t getting better no matter what you try is tough and confronting. That’s why we hired a psychologist. For our STAFF. That way, they can process those feelings of frustration/failure and not be tempted to gaslight/blame their patient.

Graded exercise has caused a lot of harm. Over 50% of ME/CFS patients report that Graded Exercise makes them worse (11 surveys/15,000 patients). Many who could previously walk ended up in wheelchairs or bedbound. meassociation.org.uk/2017/09/mea-re…

Latest guidelines on #MECFS from Mayo Clinic. Says: “Graded exercise therapy has not been proven to be beneficial in ME/CFS and is therefore not recommended.” Definitely time to update Australian guidelines ⁦Royal Australian College of GPs (RACGP) President⁩ mayoclinicproceedings.org/article/S0025-…

Sophie Scott Royal Australian College of GPs (RACGP) President The Victorian Department of Health Better Health Channel now has up-to-date, evidence-based advice for ppl w #MEcfs "Exercise is not a cure or treatment for ME/CFS" Better Health Channel This contradicts the RACGP HANDI guidelines. It's time to update the Aust guidelines. betterhealth.vic.gov.au/health/conditi…

A privilege to be home in Melbourne and today talking about #MECFS with Dr Shane Huntington OAM & Dr Prof. Euan Ritchie (@euanritchie.bsky.social) on radio 3rrrfm. My co-interviewee? My Mum! Prof Prof Ros Gleadow FAA [link below] #pwME #MEawareness 1/2

An important thread, yet it's only the tip of the #GreatestMEdicalScandal, #JohnVsJonVsME #MaeveInquest

On Severe ME/CFS Awareness Day I’m sharing this scale Whitney created to document his improvement on Abilify, when he always remained at “0” on all other scales.