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Bumping this thread in case anyone has any suggestions

That’s okay. I didn’t take it as criticism and had already figured that everyone would be focussed on DecodeME today

Yes, my request was poorly timed. I hadn’t seen the news when I posted this morning!

Hi everyone, I’m working on a mapping exercise of specific advocacy asks (especially related to clinical care, but also broader topics) that could be applied in Australia. We have our existing asks, but are looking to map out what is being focussed on around the world. I’m especially interested...

The members of the Guideline Development Committee, which will develop new clinical guidelines for Australia, have been announced today. https://www.nhmrc.gov.au/health-advice/me-cfs/guideline-development-committee

C Can you send that feedback through to Emerge: information@emerge.org.au Thank you!

The issue with the email has been fixed. As for replies, I think they’re being flooded with emails and things, which is slowing down responses.

Thanks for highlighting the issue with the email account. I’ll provide NHMRC with the feedback that there’s an incorrect email address on some of their material

Merged As most of you are aware, the Australian government has funded the development of new Australian clinical guidelines for ME/CFS. This process will run for 3 years, and will include public consultation and consumer input. The first phase has begun, with a scoping survey, released on...

A Parliamentary Friends of ME/CFS meeting was held in Canberra yesterday. The Federal Minister for Health and Aged Care, Mark Butler, spoke, along with Senator Jordon Steele-John and MP Dr Mike Freelander, as well as patient advocates Penelope McMillan and Carla T, plus Alan Singh (NHMRC) who...

Thanks! I’ll have a look for those

Hi everyone, Emerge Australia is looking at revamping some of our resources (including our online forum) to make them more friendly for people who have visual sensitivities. Our first step in this project is to look for any published research which explores visual sensitivities in ME/CFS or...

We’ve been sitting on this information, itching to be able to share it! This is a huge win for us! Finally, Australians with ME/CFS will get updated guidelines. I met with the Health Minister almost two months ago, and I came away feeling very encouraged and optimistic that he would provide...

Good question. I’m not sure. I’m not aware of him having run a clinic or anything. His bio consistently says he worked as a part time GP for years, and I’ve often wondered just how much clinical practise he really has, he seems to do a lot of academic work. He was one of the co-authors of that...

Sadly, they have all the evidence. A year ago, we got wind that the committee was considering whether to update the guide, so Emerge and other groups and a bunch of patients sent them the evidence. But this isn’t about evidence (the use of the PACE trial is telling. Is it used anywhere else in...

Thanks, Hutan. We are definitely working on this behind the scenes.

Worse than stuck in the dark ages. It’s sneakily trying to entrench the dark ages. There are so many bad bits here (like they just rename GET as “incremental physical activity, and they still cite the PACE trial manual as a guide for how to implement GET), but the bit that really got under my...

Emerge Australia hosted an event at Parliament House in Canberra today. There were a wide range of speakers (including little old me). Details of the event: https://www.emerge.org.au/sick-and-tired-casting-a-long-shadow-long-covid-inquiry-2023/ Unfortunately, due to technical difficulties...

Does anyone have a PDF of the updated Best Practice page?

Great questions! I’ll try to address them as best I can (I’m not working on the registry): - Building on the registry: expanding on the registry to include young people (aged 12+), people with Long COVID, and people with ME/CFS as well as Long COVID. - Existing registry participants will...