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I did a private submission over zoom. It was easier than I thought. Disability Advocacy services are also funded to help people with their submission. I had an advocate help me prepare and write a follow up written submission to add to my verbal submission.

I am looking forward to reading those submissions when they are finally published!

I was rapt that they read and took on board the submissions to the Joint Parliamentary Committee by Emerge and ME/CFS Legal Resources Australia and the submission the NDIS group made to the National Disability Agreement Review. The fact that the summarised the recommendations made in these...

A huge thank you to our advocacy organisations and patient reps on the Committee. And thank you to those who helped promote the public consultation process. 250 submissions include a massive contribution from our community that has helped shaped this document and helped the committee to...

Updated version is here: https://nhmrc.gov.au/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome I am also guessing the NHMRC will update this page with a lot more detail once they have released their report.

@dave30th I know you can't see this as you are blocked - I really think paranoia is setting in.

Whatever name is finally selected we need to have a plan to migrate people diagnosed with CFS to the new name. In Australia it is extremely hard to get a diagnosis of ME. I was diagnosed with CFS using the Canadian Criteria eight years ago. On every report it says CFS. I am getting to the...

How is it going @Paradoxfloss. Have you been able to contact the advocacy agency Greg mentioned? I have been thinking of you and hoping that the hospital have been making your stay more comfortable. Please feel free to PM me either here or on facebook. Allie

Interesting conclusion: In conclusion, the DMN in CFS/ME is abnormal with more irregular activity, weaker connectivity, and more complex connectivity dynamics. In particular, the PCC activity in CFS/ME is more irregular and complex. Further, weaker connectivity among DMN hubs was observed and...

and the reference to this study has also been removed: 282. Moss-Morris R, Sharon C, Tobin R, et al. A randomized controlled graded exercise trial for chronic fatigue syndrome: outcomes and mechanisms of change. J Health Psychol. 2005;10:245-259. Abstract

Under Evidence Scores in the new version this has been removed: Graded exercise therapy and overall improvement: there is poor-quality evidence that graded exercise therapy results in greater overall improvement in symptoms and functioning.[282] [208] Evidence level C: Poor quality...

Apparently there is new version of the document (updated in the last month): Update: Nov 13th We wrote this post based on a version of the guide that appeared recently and had been updated on July 31, 2017. That version lists Peter White as among three peer-reviewers. As commenters pointed out...

If a heart rate monitor was to listen for the second when a it goes above a limit it could be going off every few seconds if your heart rate is close to the limit set. That is why they generally wait for the heart rate to be above or below the limit for a set time, i.e. one or two minutes...

I have just brought the Fitbit Ionic. It was pricy but I have programmed an app for it that checks for heart rate zones based on the principles of pacing with a heart rate monitor - i.e., Resting, Active Recovery, Exertion, and Anaerobic Threshold. I am currently testing the app but hope to be...