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That’s great! Always good to quote back at him and his colleagues when asking them for money!

From Australia: Sally Black wrote a heartwarming story about how Millions Missing Palm Cove turned out, despite the tshirts not turning up in time and not getting to the beach! https://meaustralia.net/2019/05/12/millions-missing-palm-cove/ At Perth’s Million Missing was federal Greens’...

Good questions @Skycloud Short answer: it depends. Australia tends to look more to USA/NIH than UK, but lots of our GPs are trained in the UK (my current one and previous one for example) so I think UK still has an influence at that level. Long answer is on the way as my article on it is...

It’s awful that there’s no help from patient support organisations either if you get held in psychiatric units. The organisations say “they don’t do individual advocacy”. At least in the UK there’s the Tymes Trust.

@chrisb Unfortunately the warnings about the 2002 Australian chronic fatigue syndrome guidelines were ignored and the dire predictions of the old ME/CFS Australia have come true. http://sacfs.asn.au/about/guidelines/index.htm Forgive me for being a ‘broken record’ about how bad the guidelines...

A young woman with very severe ME contacted me to help tell her story. Over the past couple of months she’s told her harrowing story of mistreatment, including two visits to psychiatric facilities. Right now she is in an awful situation, so sick she can’t tolerate people in the same room and...

There’s a number of problems with this petition: 1. It’s already been tabled in Parliament (paper version) and had a response from government. 2. There is an election in three weeks and the Minister will most likely change, so even if it’s delivered before then he won’t have time to act. 3...

There’s a number of problems with this petition. 1. It’s already been tabled in Parliament (paper version) and had a response from government. 2. There is an election in three weeks and the Minister will most likely change, so even if it’s delivered before then he won’t have time to act...

Next month Australia is holding a federal election, so it’s a final chance to push for funding commitments. Here’s a letter template to make it easier for people with ME to write to their House of Representatives and Senate candidates...

Thanks @alex3619, misdiagnosis is a big issue in Australia, fewer than a third diagnosed with CFS meet the criteria for ME (https://meaustralia.net/2016/05/26/australia-2-in-5-cfsme-diagnoses-wrong/) Agreed, ME Australia provided the NDIA with up-to-date references to refute the myths and...

This thread has made me hungry! Sorry bunny-lovers. And laugh at the very funny responses. Here’s perhaps another ingredient to add to the stew recipe? ‘Medicinal cannabis scheme will make 'life worth living' for Canberra resident’...

Australian psychiatrist Hickey was an author of the Fukuda as well as Australian CFS Criteria, which advises GPs to tell their patients they have ‘post infectious disease state’ as it might be “prudent” not to tell them they have CFS. I’m interested to know where you get those figures on...

I really hope you can find support. Agreed, they are conflating the two. Unfortunately the advisory committee report says there’s a 50-80% rate of recovery in cases longer than 7 years. https://consultations.nhmrc.gov.au/files/consultations/drafts/publicconsultationdraftceoreportmecfs.pdf

Perhaps, but may be unlikely as the last government minister to take action was Wooldrige (Liberal) around 20 years ago.

Hi @Esther12, That paper from last year shows the NDIA hasn’t ever considered it because the evidence it has says ME nor CFS is permanent. In the meeting with the NDIA they mentioned they use Australian reports, studies and experts. The 2016 Parliamentary report stated only 25% were...

Absolutely @Sly Saint! You’ll notice that is true from watching the Emerge conference talks recently. It’s perpetuated by patient organisations too. I can’t tell you how infuriating it was when my local paper wrote about me (where I never uttered the words ‘chronic fatigue’ even followed by...

Emerge is again asking the Minister about List B, but CEO Heidi Nicoll specifically asked his department already, in our meeting and already received an answer. They explained to us they don’t use List B any more in assessing applications. It was something from when they first started up...

@Ravn Here are my suggestions (I used to work in a Minister’s office & government here in Australia). Limit your requests to three things. You could ask them: - to commit to funding biomedical research, with clearly defined cohorts. - to fund GP education - create or update information on a...

Architect Anthony Clarke and pwME Anna Kerr spoke recently at the Emerge conference about designing homes taking into account our disease. I found it really fascinating and asked Anthony to write about it. Anthony also teaches architecture and Anna has gone to his classes to talk to students...

How could the committee’s report misinterpret the Dubbo study when a Dubbo study author is on the committee? I don’t think they are talking Fukuda CFS, as it’s the same language used in the Australian CFS Criteria.