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

rvallee said:
This does not look promising. At all. Same old junk.
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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.
 
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Yes, but one of the local advocates has been a proponent of an expensive unproven therapy.

It will be really disappointing if we see a guideline coming out recommending a range of supplements and other unproven treatments instead of making it clear that there are no treatments that have been shown to be useful. Australia has had a problem with 'ME/CFS specialist doctors' promoting all sorts of unproven ideas.

Sorry, edited.
 
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Simone said:
Merged
As most of you are aware, the Australian government has funded the development of new Australian clinical guidelines for ME/CFS. This process will run for 3 years, and will include public consultation and consumer input.

The first phase has begun, with a scoping survey, released on Friday. The purpose of this survey is to:
  • understand the needs of the community regarding clinical practice guidelines
  • understand potential enablers and barriers to the care of people with ME/CFS
  • establish priority areas for evidence review that reflect the needs of the ME/CFS community
  • identify appropriate formats for the guidelines
  • identify further areas for research where the evidence base is lacking

The survey will be open until April 27, and anyone can submit a response.

https://consultations.nhmrc.gov.au/clinical-practice-guidelines/scoping-survey-me-cfs/
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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)?
 
Ravn said:
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)?
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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
 
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
 
It feels very much like a survey done to tick the box of doing consultation. It's hard to provide much of value with that structure.

I mentioned the need to search for harms, including harms of assuming that ME/CFS is a psychosomatic condition.
Mentioned the NICE warning against the Lightning Process and the tendency of self-proclaimed ME/CFS experts to promote treatments that are not supported by evidence.
I mentioned that some people with Long Covid meet ME/CFS criteria and should be diagnosed with ME/CFS, so that they can benefit from the ME/CFS guideline. And that there should be a link from any guidance about Long Covid to the ME/CFS guideline.
 
Submission from RACGP to NHMRC in response to the scoping survey for the development of clinical practice guidelines for ME/CFS:
The National Health and Medical Research Council (NHMRC) sought feedback from general practice on proposed evidence-based clinical practice guidelines for ME/CFS. The RACGP provided general feedback outlining the importance of the guideline to address multi-disciplinary care, comorbidities including mental health, and quaternary prevention including managing diagnostic uncertainty and exercise interventions.
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Link | Full letter (PDF)
 
Nightsong said:
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)
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Exercise interventions
The debate between those that support incrementally increasing physical activity and those that support staying well within an energy envelope requires a dispassionate examination of trial evidence, particularly the multiple long-Covid trials (388 registered trials)viii that are emerging and are likely to provide additional evidence in the near future.

Surveys by patient groups of their members have suggested that incremental physical activity may be harmful to some people with ME/CFS and advocate against such programs. It is possible that these experiences may be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience, or subgroups within the spectrum of ME/CFS who are more vulnerable to more severe post-exertional malaise.

It will be important that implementation of any treatment involving an increase in physical activity is very sensitive to these concerns and the guideline must raise awareness that many patients and carers will be aware of the strong advocacy specifically against such programs. Trust and acknowledgement of these concerns, with appropriate caution, will necessarily be a crucial part of guideline recommendations.
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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?
 
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