Australia: National Health and Medical Research Council (NHMRC): Development of ME/CFS guidelines

@Ravn I doubt they’ll change it, but they might be persuaded to do another survey because they missed the mark on this one.

 

This does not look promising. At all. Same old junk.

 

You never know! The local advocates have worked hard to even get to this point and seem to feel the health ministry is serious. I'm sure they'll fight hard for the guidelines to meet the needs--just as those on the NICE committee did. But I also assume there will be GET/CBT die-hards on whatever panel is developing them.

 

https://virology.ws/2025/03/03/tria...survey-seeks-input-for-new-me-cfs-guidelines/

 

I'm getting an address not found delivery failure message for the email contact listed on the survey website (copy-pasted twice and sent from two separate email accounts, same problem with both, not a typo issue on my side). There's also a contact phone number listed but I leave that to the Australians

@Simone are you in contact with the survey organisers and able to forward the technical issues raised in this thread (the faulty email address and that not everyone gets to answer all questions)?

 

On several other NHMRC pages relating to ME/CFS (link, link) there is an email address that begins me_cfs@ (with an underscore, not a dash). Perhaps that one will work?

 

Good detective work. No reply yet but at least the email didn't bounce

 

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

 

Thanks Simone

Just for the record, my email to me_cfs@... (as guessed by Nightsong) didn't bounce but still no reply

 

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.

 

I've obtained a PDF with all the survey questions but have been asked not share the document as they don't have the capacity to process a whole lot of paper submissions

So just summarising here the questions I didn't get to see responding to the online survey as a patient (see post 38 for those I did see):

Health professionals are asked about what guidance documents they're currently using, what their preferred guideline format would be and if there are any other tools they would like to see

Researchers are asked about what research they're doing and who's funding it

Organisations are just asked who they are

 

https://twitter.com/user/status/1916047727454044338


Closing tomorrow (Aus time). Can be completed in around 10 mins, apparently.

 

Worth filling in. Rather quick and possibly quite important.

 

Me done too.

 

Submission from RACGP to NHMRC in response to the scoping survey for the development of clinical practice guidelines for ME/CFS:

Link | Full letter (PDF)

 

Why did they not mention that the GET studies have shown that it’s ineffective? It appears like they assume that it might still be an effective treatment. On what basis?