Australia: RACGP: GET for CFS

Trish said:
That's very troubling. Does anyone have any idea why Glasziou is so adamantly supportive of GET? I understand his background is as a GP and then a professor of evidence based medicine and he's at the heart of the Cochrane project. The fact that he and Peter White were advisors on the 2019 Cochrane GET review and presumably earlier versions is a big negative.
Has Glasziou ever run an ME/CFS clinic, or done his own research on ME/CFS, or is he just a BPS groupie with no understanding of evidence?
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One major feature of evidence-based medicine appears to be that evidence-based conclusions cannot be overturned. We've seen this argued more or less in those terms when NICE contradicted the old evidence, there was a strong overall argument that it contradicted the old evidence, and that makes it invalid. And this is far from the first time. Even with PACE they used the excuse to align with past trials, which makes the entire process useless, sham trials, nothing but a political process.

Just one more way evidence-based medicine is completely unfit for purpose. Evidence doesn't matter, and conclusions cannot be overturned. They are correct when first established and going back against is perceived as a personal attack. Every criticism is always framed as a personal slight, the substance of the criticism is simply never discussed on its own, always reframed with sophistry. I keep seeing this and it's so disturbing.

I doubt it's more complicated than this. People aren't nearly attached to facts as much as they are to opinions, and there have long been very strong opinions about this. It's worse than pseudoscience, it's anti-science empire-building. I keep seeing and saying how even though we are at the center of this, the whole controversy about ME is about far more than just us, it's about the lack of validity of evidence-based medicine and about propping up a failed system that was supposed to be the future of medicine, and actually managed to be worse than its past.
 
Trish said:
Does anyone have any idea why Glasziou is so adamantly supportive of GET?
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Because he's the surfing professor? My own contact with him has been very irritating. He referred way back to my PACE investigation as an ad hominem attack--which it obviously wasn't. We had further exchanges online last year in which he just acted like all concerns about PACE were nonsense.
 
Caroline Struthers said:
It's all pretty awkward as PG is on the executive committee of the organisation I work for....hey ho. I hope he doesn't "execute" me ;-)
https://www.equator-network.org/about-us/equator-network-what-we-do-and-how-we-are-organised/
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Professor Paul Glasziou teaches Evidence-Based Medicine and is the Director of the Centre for Research in Evidence-Based Practice, Bond University. His key interests include identifying and removing the barriers to using high quality research in everyday clinical practice. Paul is a leader within the Reward Alliance, investigating research waste and promoting better prioritisation, design, conduct, regulation, management and reporting of health research. His other research interests are in overdiagnosis and overtreatment, particularly in general practice, the uptake of evidence for non-drug interventions, and the automation of systematic review processes.
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and the automation of systematic review processes
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It'll be something watching him completely change his tune once this happens and his own research is dismissed as garbage.

It's easy to dump on LLMs and their potential to simply parrot what's in the literature, but that's only as long as they can't reason. Once they can do that, once they never miss a logical fallacy or contradiction, they will simply not care about any biases and agendas from the people who did bad studies.

It will actually be a serious controversy. Good models capable of doing competent reviews will make so many people so angry that we will see a huge reactionary movement in response, demanding that it all be thrown out, and I'm sure Glasziou will be in that camp. But it will be good overall and no paradigm shift occurs without making a lot of people mad.

Although reading his description really has that "At [big tobacco company], we value life above all" vibe. Just comically fantastic self-description.
 
It will be worth keeping an eye on how long the RACGP takes to update the citation for the Larun et al review in this clinical guidance supporting the use of exercise. It's still currently linking to the 2019 version.

Larun L, Brurberg K, Odgaard-Jensen J, et al. Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews 2019 Oct 2;10(10):CD003200. doi: 10.1002/14651858.CD003200.pub8. PMID: 31577366. Note: Cochrane is currently updating this review with a new author team.
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Hutan said:
It will be worth keeping an eye on how long the RACGP takes to update the citation for the Larun et al review in this clinical guidance supporting the use of exercise. It's still currently linking to the 2019 version.
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Even if some one gets taken to the 2019 version, at the top of the page in red it says there is a newer 2024 version and links to that. So a casual reader might be seduced into thinking that the 2024 version is actual a newer edition that supersedes the 2019 one rather than being identical in content.

[added - the link to the supposed 2024 version is now in a highlighted box at the start of the 2019 version, meaning you can not start to read it without noticing that it is supposedly replaced by a new version. This editing of the link from the 2019 to the 2024 draft, suggests that creating a new 2024 version (despite it being identical except having a different editorial note) was a deliberate act not an administrative accident, though we don’t know at what level the decision was made.]
 
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AGREE II Assessment of RACGP Recommendation of Incremental Physical Activity for Myalgic Encephalomyelitis Chronic Fatigue Syndrome (ME/CFS)

Jackie Stallard

13 January, 2025

Overview
An assessment of the Royal Australian College of General Practitioners (RACGP) Treatment Guideline For Incremental Physical Activity In Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS) rated the guideline as not fit for purpose, with a score of 28%.

The assessment evaluated the RACGP guideline under the AGREE II instrument. The AGREE II instrument is a rigorous, internationally used tool for assessing guideline quality.

The RACGP guideline received the minimum score for 11 of the 23 AGREE II items; 2% for rigour of development; and 11% for stakeholder involvement. The main deficits are:

• The guideline provides no evidence of a systematic review of the research, or a critical assessment of the methodology and limitations of the cited papers. Consequently, the guideline failed to meet the requirements of items 7 to 10 of AGREE II.

• The listed benefits of exercise therapy are for other fatigue-related conditions; not for ME/CFS. On this point, the guideline fails to meet item 12 of AGREE II, which requires an explicit link between the recommendations and the evidence.

• Item 5 of AGREE II requires stakeholder consultation and consideration of stakeholder views. Although the HANDI project team included practitioners and researchers from a wide variety of disciplines, they did not appear to be involved in the care of people with
ME/CFS. No attempt appears to have been made to consult with the patient population
and no patients were included in the committee. Therefore, the RACGP guideline fails to have actively consulted with stakeholders and to have considered their views.

• The guideline acknowledges reports of harm from ME/CFS patients undergoing exercise programs but dismisses the reports without providing evidence for the dismissal. This contravenes items 5, 11 and 12 of AGREE II. These items require consultation with the target population; an explicit link between the recommendations and the supporting evidence; and equal consideration of benefits and harms.

• The guideline concedes that the recommendations may not apply to patients diagnosed with ME/CFS under stricter criteria, with more serious postexertional malaise, but does not indicate how to differentiate between the patients who will benefit and those who will experience harm. Therefore, the guideline fails to fulfil items 3 and 15 of AGREE II, which require that the target population be well defined; and that the recommendations be specific and unambiguous.

Overall, the guideline development group failed to rigorously review the evidence; link recommendations to the evidence; involve stakeholders; or give equal consideration to benefits and harms. Consequently, the assessment found that the RACGP guideline is low quality and not fit for purpose.

This report also documents an assessment of the IOM guideline for ME/CFS diagnosis and the NICE guideline for diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome under the AGREE II instrument. In contrast to the RACGP guideline, the AGREE II assessment rated the IOM guideline and the NICE guideline as high quality, scoring 83% and 94% respectively. Pages 18-19 contain a table comparing the RACGP, NICE and IOM guideline scores. Both the IOM and NICE guidelines scored well for scope of purpose, rigour of development, stakeholder involvement and clarity. Both guidelines scored higher than the RACGP guideline for editorial independence. Given that the high quality NICE guideline covers both diagnosis and treatment, it is recommended that the RACGP guideline be replaced as soon as possible with the NICE guideline, until the NHRMC has completed its own guideline review.

Link | PDF
 
That's a pretty damning assessment of the RACGP ME/CFS guideline which is called a HANDI guide, and simply recommends GET, with PACE and Cochrane as references.

I don't know who Jackie Stallard is, nor is there any information on the website about whether this is an individual or an organisation.

I took a quick look at the treatment page. OK on GET, not sure whether I agree on CBT/ACT, and dubious recommendation of a Health Rising post listing drug and supplement treatments to try.
 
Trish said:
That's a pretty damning assessment of the RACGP ME/CFS guideline which is called a HANDI guide, and simply recommends GET, with PACE and Cochrane as references.

I don't know who Jackie Stallard is, nor is there any information on the website about whether this is an individual or an organisation.

I took a quick look at the treatment page. OK on GET, not sure whether I agree on CBT/ACT, and dubious recommendation of a Health Rising post listing drug and supplement treatments to try.
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Does it matter if the recommend switching to NICE?
Or have I misunderstood what you were talking about?
 
I agree with the recommendation to switch to NICE, though NICE is far from perfect, still including CBT and exercise in modified forms and sleep hygiene I think.
My concern is more that if this is just one individual's blog, which it seems to be, then it will have no clout. And it's not all evidence based.
 
forestglip said:
The RACGP guideline received the minimum score for 11 of the 23 AGREE II items; 2% for rigour of development; and 11% for stakeholder involvement.
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This seems like a fair assessment. Things are even worse than that, but this sums it up pretty well. The only way they achieve their ends is by cheating. The fact that rampant cheating isn't just tolerated but beloved is a searing indictment of the entire profession. Shameful malfeasance showing how all the rules, standards and principles they espouse are easily chucked out a window whenever they feel inconvenient in achieving a biased outcome.

Normally this level of dereliction of duty should lead to serious consequences, lots of people being fired at a minimum. Everything coming out about the planned update so far suggests a repeat of the same, with the same people and with the same intent.
 
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