News from Australia

https://twitter.com/user/status/1656494374455324673

 

Apparently, a Royal Australian College of GPs committee is meeting to re-evaluate its recommendation for graded exercise therapy for ME/CFS. Final decision is due end of May.
Has this been discussed here?

The committee values the 2019 Cochrane review into exercise therapy for ME/CFS.

I don't know who the author is, but a critical review of the Cochrane review has been published on https://mecfs.au/racgp-recommendation-of-graded-exercise-therapy-for-me-cfs/ and this has been sent to RACGP.

There is an opportunity to add more voices by lodging a complaint with RACGP about promotion of Graded Exercise Therapy using their complaint form. https://www.racgp.org.au/do-you-have-a-complaint

 

Would it help to send it in the form of a personal story about how it's negatively impacted someone or would that just be seen as taking the piss? And does an outsider commenting count?

 

@Caroline Struthers

 

From Natalia Hodgins on Twitter.

"A heartfelt thank you to @SenatorJordon and @MariaVamvakinou for re-establishing the Parliamentary Friends of ME/CFS in Australia. A launch event will be held on 13 June, 11am-12pm AEST at Parliament House. All are welcome to attend via live-stream: us02web.zoom.us/j/88962701771"

"For any MEeeps who can attend in-person, there's limited seating at the venue so please RSVP to the Sentor's office to express your interest in attending: Naomi.Brooks@aph.gov.au."

"At the event, MPs will be invited to hear from community advocates, including reps from @EmergeAus, @MECFSAustLtd and @australia_call about how they can best support people with ME/CFS from their positions in Parliament House."

 

This is a good article about the difficulty in accessing support in Australia:

 

Fifth Covid wave hits Australia as cases spike in every state and territory

Fifth Covid wave hits Australia as cases spike in every state and territory (msn.com)

 

This one too

 

There's a long Twitter thread here from Emerge Australia summarising the events of the meeting:

https://twitter.com/user/status/1668424206940532736


[perhaps there should be a dedicated thread for the new Parliamentary Friends of ME/CFS group?]

 

You beat me to it @Sean.

I'm looking forward to a reply from the RACGP to the ABC's request for a comment.

I was just about to write yet another complaint about the ABC using Chronic Fatigue instead of Chronic Fatigue Syndrome when I noticed the full name was there in headline. What a nice surprise.

 

Further to the above posts about the new Parliamentary Friends of ME/CFS group:

 

About scientific fraud and misconduct:

Founded by a concerned senior scientist, the "online tool Retractions Australia [ https://retractions.au/ ] is tracking scientific papers that have been retracted – or pulled – by peer-reviewed journals".
https://www.theage.com.au/national/...ience-fraud-in-australia-20230626-p5djj6.html

The online tool has an interesting page of information about Australia sourced from Retraction Watch listing the top ten institutions and journals involved, those with the most papers retracted, the most common reasons for the retractions, and the titles of the most recent retractions.

 

website Calendar-Australia.com

What does a CFS crash feel like?

uses quotes from different websites to answer questions.

this one could do with changing

https://www.calendar-australia.com/faq/what-does-a-cfs-crash-feel-like

 

Doesn't seem to have been posted.


Medical Research Future Fund announces panels for priorities including childhood mental health and long Covid

The long Covid group’s terms of reference require it to consider a recent parliamentary inquiry into long Covid, as well as existing research funding. Its three main priorities will be post-viral syndromes, the effects of Covid-19 in triggering specific conditions, and “medically unexplained conditions” such as fatigue. The panel will be chaired by Gail Matthews, head of infectious diseases at St Vincent’s Hospital in Sydney. The funding for this stream is A$50m.

https://www.researchprofessionalnew...-appointed-to-guide-227m-in-mrff-investments/


Very unimpressed at "fatigue" being a "medically unexplained condition" rather than a symptom but whatever.