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

The NHMRC has contacted the College advising that they will be establishing a Guideline Development Group and have requested that the College nominate members with expertise in:


This sounds pretty bad I am afraid.
The guideline will presumably be written by the people with the greatest vested interest in protecting old ways. The chairmanship will likely go to a rehabilitationist.

I may be over-cynical but that would be par for the course.
It would need a good representation of patients to have a chance of being sensible.

 

My assumption as well, but that's only because it happens like this every single time.

 

I'm counting the tantrums and systemic refusal to implement any of it as part of the process itself. It set off to a bad start, stacked with ideologues, still managed to produce something reflecting reality that would have significantly improved outcomes, and still failed because it was rejected entirely.

Doesn't matter much if something mildly good is produced if it's arbitrarily rejected by the health care system and nothing changes.

Otherwise it's like leading a race most of the time, then crashing before you reach the finish line. That's a loss even if you lead for 99% of the race.

 

I'm not familiar with how these processes usually go, but this seems excessively slow. It could be that this is standard bureaucratic inefficiency, but even by those standards 4 years is extreme. Like taking 30 years to build a single kilometer of road extreme.

Are those systems really just that bad all-around? Or is this just the special exemption we get when those systems have no intention of doing any of this and are just slow-walking it as long as possible to give it the possibility of being cancelled out by letting enough time pass?

I frankly can't conceive of such a process even taking one year without having arbitrary months-long "just waiting around" periods. Like it reflects how health care work: 99-99.9% just waiting around for someone, without about 1-2 hours maximum of work done during a waiting around period of 6 months.

 

So they're assuming nothing will change in the evidence base between now and 2028

 

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/

 

I took the survey and said I’m not from Australia. I didn’t encounter any questions that were sufficient to address these concerns.

 

The whole thing was very vague.
I filled it out and stressed a couple things,

ie. the centrality of PEM and that PEM is a worsening of the illness
Barriers to care for very severe individuals like inability to communicate or tolerate external stimuli
To call out both the psychosocial and biomedical “treatments” that have little evidence behind them
Also, tubefeeding.

 

I asked them to include the NICE review and to acknowledge and describe the historic and current systemic abuse and neglect of pwME/CFS. I believe it’s an integral part to the patient experience, and something every provider should be aware of.

 

I filled it in as an individual 'international' respondent. In answer to question two I stated that Australian guidelines matter to me as a New Zealander because they'll influence medical practice in NZ

Here are all the questions I was presented with, as @Utsikt says they don't cover all the purported aims of the survey:

1. Privacy Collection Notice

2. What is your interest in completing this survey? For instance, do you have, know of or care for someone with ME/CFS? Have you previously had ME/CFS or related conditions? Do you treat people living with ME/CFS? Do you research ME/CFS or related conditions?

3. Are you responding as an individual or on behalf of an organisation?

4. What state or territory do you live in? [includes answer option 'international location']

5. Do you live outside of the capital city in your state?

6. What is your sex?

7. What is your gender?

8. Do you identify as Aboriginal and/or Torres Strait Islander?

9. Do you speak a language other than English at home?

10. Which of the following best describes you? [lived experience, researcher, etc]

11. If you currently have ME/CFS

How long have you had it for

Is a medical practitioner helping you manage your symptoms?

What support are you using to help manage your symptoms?

12. Do you have experience with other related conditions?

[questions 13-19 were not shown to me]

20. What are the three most important topics that you would like to see in an Australian clinical practice guideline for ME/CFS and related conditions?[free text]

21. In a guideline development process, health outcomes (or symptoms) are identified and prioritised before searching for evidence. What health outcomes would you consider important to review the evidence for? [tick box list plus free text option, limit 300 characters]

22. Are there any other issues you feel are important to address in the guideline? [free text]

23. Permission to Publish [de-identified responses, you can deny]

 

@Ravn maybe it’s worthwhile to let them know that the design isn’t fit for purpose? The questions don’t even ask for some of the things they want to know.

 

I suspect some of the 'missing topics' are addressed in the questions that weren't presented to me as a patient. Had I identified as a researcher instead - you're not allowed to choose multiple identities - I probably would have been presented with questions about "areas for research where the evidence base is lacking". If that is so it's rather insulting, the assumption that patients would have nothing to contribute to these topics.

Anyway, I very much doubt they would change the survey now that it's underway. The best thing to do might be for people to either choose one of the professional identities if they apply or to comment in the free text field for Q22 (Are there any other issues you feel are important to address in the guideline?)

The topics not addressed in the questions I was given are:

• enablers and barriers to the care of people with ME/CFS
• appropriate formats for the guidelines (whatever that means)
• areas for research where the evidence base is lacking