SBS Australia documentary on ME

Thanks for that, Andy. I couldn’t get that work.

 

The forum software, while dealing with most things really well, doesn't work that well with Facebook videos - putting the URL in a code 'box' and asking people to copy and paste it is about the best way of doing it so far.

 

Best video i've ever seen about ME. First time i've seen my own experience represented so accurately (the lady with the glasses could have been me, so much so that i cried).


And oh my goodness @dave30th i just started crying again when i saw you tearing up. Sendin love across the miles to one of the true heroes of our community. Also

This. I felt so sad for you to bear this burden. I very much hope you'll keep fighting for us, but if you do need or want to move on to other areas, you will do so having made a huge contribution & should not feel in any way guilty. The indirect responsibility for deaths belongs to many, none of them you, whether you hang around or not.

 

I haven't watched "The Feed" program yet since I was in Hobart last night meeting and listening to David Tuller's presentation. Hopefully I have a recording of The Feed to watch later today.

I just skimmed through the link mentioned here:

and one thing stood out

I think this is the at the heart of having this and other bad recommendations overturned. It looks like the NHMRC Evidence levels are based on something much like Cochrane. In the NHMRC scheme there seems to be a ticky box "Body of evidence matrix" which lots of components, the first being "Evidence Base" where one can tick Excellent, Good, Satisfactory or Poor based on the level of the study and the risk of bias. I suspect that GET supporting studies have been mis-characterised on risk of bias both in this RACGP recommendation and in the Cochrane reviews. Maybe this is the point on which they should be challenged.

 

Article:
OPINION: NDIS must recognise chronic fatigue or suicide will follow
“NDIS legislation is supposed to support people based on their incapacities, not their medical diagnosis,” says Susan Hutchinson, whose severely debilitating disease is not recognised by the NDIS."

https://www.sbs.com.au/news/the-fee...ognise-chronic-fatigue-or-suicide-will-follow