oldtimer
Senior Member (Voting Rights)
That's what I thought. I would love to believe Sandler is just the token BPS person.
It looks like a balanced and expert panel to me, not that I know anything more than what is written on the list though.
Australia: National Health and Medical Research Council (NHMRC): Development of ME/CFS guidelines
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It looks like a balanced and expert panel to me, not that I know anything more than what is written on the list though.
Penelope McMillan
Established Member (Voting Rights)
It would be helpful, I think, if any specific critiques of the papers above could be provided in this thread.This is one person based on my unreliable memory who I would be a bit worried about:
Dr Carolina Sandler
- Senior Lecturer, School of Health Sciences, UNSW
- Accredited exercise physiologist and clinical researcher with research interests being post-infective fatigue states and cancer survivorship
- Part of the Fatigue Research program at the Kirby Institute, UNSW.
Relevant publications:
- CI MRFF 2023 Post-Acute Sequelae of COVID (lead institution Uni of Melbourne)
- Cancer Institute NSW early career fellowship (partial salary & project funds)
- Previous clinician and current co-lead of UNSW Fatigue Clinic and Research program.
Speeches/lectures:
- Jones, M. D., Casson, S. M., Barry, B. K., Li, S. H., Valenzuela, T., Cassar, J., Lamanna, C., Lloyd, A. R., & Sandler, C. X. (2023). eLearning improves allied health professionals’ knowledge and confidence to manage medically unexplained chronic fatigue states: A randomized controlled trial. J Psychosom Res, 173, 111462. Q1
- Casson, S., M. D. Jones, J. Cassar, N. Kwai, A. R. Lloyd, B. K. Barry and C. X. Sandler (2022). "The effectiveness of activity pacing interventions for people with chronic fatigue syndrome: a systematic review and meta-analysis." Disabil Rehabil: 1-15. Q1
- Sandler, C. X., E. Cvejic, B. M. Valencia, H. Li, I. B. Hickie and A. R. Lloyd (2022). "Predictors of Chronic Fatigue Syndrome and Mood Disturbance After Acute Infection." Front Neurol 13: 935442. Q1
- Sandler CX, Wyller V, Moss-Morris R, Buchwald D, Crawley E, Hautvast J, Katz B, Knoop H, Little P, Taylor R, Wensaas KA, Lloyd AR. (Long COVID and post-infective fatigue syndrome – a review. Open.Forum.Infectious.Diseases.¡.2021;8(10)
fab440. doi: 10.1093/ofid/ofab440
- Sandler CX, Lloyd AR. Chronic fatigue syndrome: progress and possibilities? (2020) The Medical Journal of Australia. (invited review) 212(9), 428–433. https://doi.org/10.5694/mja2.50553
- Cvejic E., Sandler CX., Keech A, Barry BK., Lloyd AL., Vollmer-Conna, U. (2017). Autonomic nervous system function, activity patterns, and sleep after physical or cognitive challenge in people with chronic fatigue syndrome. J Psychosom Res. 103:91-94. DOI: 10.1016/j.jpsychores.2017.10.010
- McBride RL, Horsfield, SL, Cvejic, E, Casson S, Sandler CX, Cassar, J, Vollmer-Conna, U, & Lloyd, AR. (2017) Cognitive remediation training improves performance in patients with chronic fatigue syndrome. Psychiatry Research. 257:400-405. DOI: 10.1016/j.psychres.2017.08.035
- Li SH., Sandler CX., Casson SM., Cassar J., Bogg T., Lloyd AR., Barry BK. (2016) A randomised controlled trial of online continuing education for health professionals to improve the management of chronic fatigue syndrome: A study protocol. BMJ Open. 7(5):e014133. DOI:10.1136/ bmjopen-2016-014133
- Sandler CX., Hamilton BA., Horsfield S., Bennett BK., Vollmer-Conna U., Tzarimas C., Lloyd AR. (2016). Outcomes and predictors of response from an optimised, multidisciplinary intervention for chronic fatigue states. Intern Med J, 46(12): 1421–1429. DOI:10.1111/imj.13251
- Sandler CX., Lloyd AR., Barry BK. (2016). Fatigue Exacerbation by Interval or Continuous Exercise in Chronic Fatigue Syndrome. Med Sci Sports Exerc 48(10): 1875-1885. DOI:10.1249/MSS.0000000000000983
- Keech A., Sandler CX., Vollmer-Conna, U., Cvejic, E., Lloyd, AR., & Barry, BK. (2015). Capturing the post-exertional exacerbation of fatigue following physical and cognitive challenge in patients with chronic fatigue syndrome. J Psychosom Res. 79(6):537-49. doi: 10.1016/j.jpsychores.2015.08.008.
- Developed and delivered lecture content to UNSW undergraduate Exercise physiology students on fatigue conditions including chronic fatigue syndrome, post-cancer fatigue, post-infective fatigue (multiple years from 2012).
While the titles alone tell a story, the content of the articles is where the NHMRC will look for evidence.
Nightsong
Senior Member (Voting Rights)
From the referenced 2020 narrative review in Med. J. Aust. - seems deeply problematic in its coverage of CBT & GET:
Art Vandelay
Senior Member (Voting Rights)
Another potential concern:
Professor Tammy Hoffman (Deputy chair)
- Leads the Centre for Evidence-Informed Health Decisions in the Institute of Evidence-Based Healthcare at Bond University, which is primarily focused on helping people make informed decisions about health
- Research aims to closely integrate shared decision making and evidence-based practice so that evidence is translated into practice better, and in a more patient-centred way
- Research aimed at health professionals includes developing and evaluating strategies and tools (such as patient decision aids) to increase the awareness and usability of evidence about interventions and skills for incorporating this into conversations with patients.
Hoffmann is a colleague of and has published with Paul Glasziou.
Glasziou is a part of Cochrane, was a co-author of that laughable Anomalies paper on the NICE Guideline, and is the author of the RACGP guidance that recommends GET for ME/CFS (and cites the PACE Trial).
It's mind-boggling that we live in a world where a Professor of Evidence-Based Medicine thinks that Cochrane's Larun review and the PACE Trial are examples of good quality evidence.
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I have quite a lot of concerns about that guideline committee - probably not helped by the fact that I tried really hard to be on it.
One is that Dr Sarah Knight is on it - we've talked about her in the context of her being the one in charge of the psychological assessment for one of Chris Armstrong's studies. See here, for example.
And a conversation with Chris about how his participants were being evaluated by Sarah Knight here.
One is that Dr Sarah Knight is on it - we've talked about her in the context of her being the one in charge of the psychological assessment for one of Chris Armstrong's studies. See here, for example.
And a conversation with Chris about how his participants were being evaluated by Sarah Knight here.
I'm also disappointed to see Chris Armstrong @MelbME on this list. That's not because I think Chris is not good at his job, to the absolute contrary, I would far rather he was using his time researching ME/CFS, and supporting his team to research ME/CFS. That is the way he can contribute most to the future well-being of people with ME/CFS.
Chris is not an expert on clinical guidelines or clinical care or ME/CFS politics or health economics, and, while he has had contact with many people with ME/CFS, he is not an expert in what it is like to live with ME/CFS or to care for a person with ME/CFS either. OMF Australia could have chosen to support people that have as good an understanding of ME/CFS literature as Chris while bringing other knowledge for the role.
The makeup of the board of OMF Australia includes no Australian person with ME/CFS. Yes, there are parents of people with ME/CFS which is something and I thank them for their service, but, no matter how good those people are, there is a risk of paternalism seeping into decision-making if the board does not have a significant proportion of people actually with ME/CFS.
I guess as an academic professor, Chris's views will carry some weight with the NHMRC and that will be a good thing. I find it sad though that OMF Australia had an opportunity to push for well-qualified people with specifically relevant skills including having ME/CFS to be on the guideline committee and chose not to do that.
Chris is not an expert on clinical guidelines or clinical care or ME/CFS politics or health economics, and, while he has had contact with many people with ME/CFS, he is not an expert in what it is like to live with ME/CFS or to care for a person with ME/CFS either. OMF Australia could have chosen to support people that have as good an understanding of ME/CFS literature as Chris while bringing other knowledge for the role.
The makeup of the board of OMF Australia includes no Australian person with ME/CFS. Yes, there are parents of people with ME/CFS which is something and I thank them for their service, but, no matter how good those people are, there is a risk of paternalism seeping into decision-making if the board does not have a significant proportion of people actually with ME/CFS.
I guess as an academic professor, Chris's views will carry some weight with the NHMRC and that will be a good thing. I find it sad though that OMF Australia had an opportunity to push for well-qualified people with specifically relevant skills including having ME/CFS to be on the guideline committee and chose not to do that.
I take the sentiment, but don't know whether it really is an either-or situation and Chris seems to be someone who genuinely hears what patients say and is doing some good research.
But 100% agree that it is frankly gobsmacking for a guideline to be excluding (which is what not including is) those with the actual condition from the guideline process, rather than centring the whole thing around that experience.
It is even more vital for a condition where research has been so distorted by non-science for so long that those who lived through that are absolutely providing their closest thing to science which is that they at least observed and listened to their own bodies in a way it has been demonstrated (by the very words of the old guideline) those who worked in that old paradigm didn't.
There is no excuse. Because if people are whinging it is somehow too hard then that's laziness and disability bigotry on the part of the organisers and other attendees that they can't even bend to the very central people the guideline is about.
And it should be being set up in such a way that not only can patients participate but that they can do so to their best of ability and health needs. It is called experiential learning, and if the others on the guideline can't do that it's not a good start is it for the attitude of where they are prepared to let such a knowledge-exploring task go, because they've already set limits that are inappropriate.
ANd yes I 100% agree that subbing in 'carers' as if that is the same is absolutely not the same. Certainly not where the carer is not included with the caree 'coming with' and being ensured to have the main voice and vote over said carer and the carer just expanding on those points for that person in order to save energy (but caree can watch and check it is accurate).
Because yes it is building paternalism in otherwise. NO matter how good the carer is. And should absolutely not be allowed to set example or precedent for a process.
How would a 55yr bloke doctor who gets a heart condition want their mum that never really got who they were and had their own ideas about what they did right or wrong and didn't fully listen to them and communicate it to their friends being in charge of what treatment choices they got 'don't worry I think Fred is probably best to just try eating a bit better first before you go offering him x, he's always been a bit fussy' or a wife suggesting rather than them putting their foot in it eg on a noise thing that perhaps it is a tolerance issue or 'getting grumpy when tired'.
You mightn't get it outright, but every relationship has a spectrum of that underlying things. Even if people get it right it is utter paternalism and psychologisation by putting words in someone else's mouth.
And having a patient alongside to correct it is vital. If only because of the group psychology. Carers can talk well on the things carees wouldn't necessarily be as expert on - the nuts and bolts of making happen what they make happen (for those who don't have to do it themselves despite it being impossible), and patients aren't being subbed in instead of them, so why vice versa?
I know there are some incredible carers who are not like this, but given the power discrepancy how on earth can people check.
And having patients involved to have to look in the eye is an important reminder of what it is supposed to all be about rather than individual's preferred role or career, the applyability of ideas or compromises being a bridge too far re: what it is signing of regarding quality of life dipping even further when you are doing it to someone's face. I'd hope as well others in the group and their attitude to them could make it clear to others where there are some in said group who lose track of those things.
The first article on elearning actually cites the new NICE guideline as supporting multidisciplinary care without mentioning that it bars GET and makes clear that CBT is only supportive and not curative. They're conflating PACE-CBT with regular CBT, as they always do. They also posit that "avoidant’ activity patterns" are among the "perpetuating factors" of "fatigue syndromes."
Art Vandelay
Senior Member (Voting Rights)
The guideline committee met for the first time. There's a very brief summary on the NHMRC website:
rvallee
Senior Member (Voting Rights)
Yup. And we all know what this means:
The beatings will continue until morale appears to improve on questionnaires where lack improvement is punished by more beatings. Medicine has a perfect record of betrayal so far, zero reason to assume even the pretense of good faith. They are doing everything the old ways to guarantee the same outcomes where they fail in control, instead of making progress by following those who know better.
Art Vandelay
Senior Member (Voting Rights)
The NHMRC has now released a report summarising responses to the scoping survey:
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rvallee
Senior Member (Voting Rights)
At some point we'll need to go on attack about the lies that opposition to the psychobehavioural model comes from a small minority. It is, in fact, a supermajority position, even direct opposition to it has a strong majority.
Because this lie keeps going around. The leaders in the ideology keep pushing it, and random physicians keep throwing it like it's some argument. And it's total fiction, has been exposed to be false a long time ago.
I have no idea how to do that, though. But it's not even that most major surveys confirm it. It's all of them, with a solid supermajority. And we find the same thing in Long Covid, for all the same reasons, and still the same lies, from people who do know better, but choose to lie anyway.
Because this lie keeps going around. The leaders in the ideology keep pushing it, and random physicians keep throwing it like it's some argument. And it's total fiction, has been exposed to be false a long time ago.
I have no idea how to do that, though. But it's not even that most major surveys confirm it. It's all of them, with a solid supermajority. And we find the same thing in Long Covid, for all the same reasons, and still the same lies, from people who do know better, but choose to lie anyway.
bicentennial
Senior Member (Voting Rights)
Art Vandelay said:
Surveyed Scope: An Agenda
1st Scoping Survey: Report said:
To meet the demand and fill the gap, the Australian Government had tasked its National Health Council - a National Health and Medical Research Council - now tasked to spend $1.1 million developing clinical practitioner Guidelines for M.E and C.F.S and:
- by now, also tasked to guide clinics on those other conditions, correlated with M.E and C.F.S. Correlated by convention if not by co-morbidity. Except too few were represented in the 1st scope.
However, this may all morph in the works of progress, since the scope also got very little uptake from the professional community cohort, which is the demographic deemed to be primary stakeholders because - after all - professionals will apply the guideline tools being researched and developed, as we speak.
So the overwhelming majority of “voting” stakeholders were deemed secondary stakeholders i.e the patient community cohort. But the scope may be applied again in different quarters to get a measure of the professions. For example, the medical Colleges, etc, were averse to being scoped, already.
Likewise the GPs. Maybe calling it an aversion is a bit too strong. Its the 1st ever Guideline to be issued and approved by this Council. Well that’s the intention if it ever completes. The scoping was supposed to measure the metrics presented by the professions saying how they want to be guided.
Seems back to front, but there is no sense of leadership these days. Performing for the crowd is not leading the way, not inspiring, not illuminating and not even informing, let alone serving. Australia has “no current clinic guidelines for M.E and C.F.S” – so - did it ever? Its virgin territory for Australia's Council (Health and Medical Research).
This Council had never before got around to the issue and approval of any Guidelines. But yes, it has a methodology, maybe good enough to match the matchless, unmatched method evolved by Britain’s National Institute CE, still issuing exceedingly good clinic Guidelines, also excelling on community care Guidelines. According to the British Government its the best.
We did, the 2002 guidelines. But they are way out of date, and were not done by the NHMRC but by the Royal Australasian College of Physicians.
bicentennial
Senior Member (Voting Rights)
This NHMRC Project Team said:
This was the initial scoping survey for research and development of Guidelines to include PEM. So far, NHMRC Australia distinctly requires “suggestions” of PEM. It looks like PEM will be a very important factor in this Guideline, but also a stumbling block if there is no definitive consensus.
Australia already has a problem with whole professional fields reluctant to fill in a guideline survey, let alone an 8-page PEM survey as a guideline. Will Australia use the Bateman Horne definition of PEM or the DePaul definition? Fatiguability is distinctly differentiated by Bateman Horne.
This Scoping Survey Report explains its method to me and I would very much like to know if this is the method used by Bateman Horne and DePaul, when deriving their definitions of common-stance. As all agree, its not enough to grade and collate umpteen publications without considering subjects.
This NHMRC data-crunching is all new to me. It required considerable resources. It took its time to produce the metrics. I wish the DePaul Team could do this for us, now they are here. Can Australian R & D follow up with a PEM Scoping Survey to narrow down the wide range of definitions in use?
This NHMRC Project Team said:
NHMRC appears to have re-defined POTS as Postural Orthostatic Intolerance Syndrome. POIS. PAIS. Never mind. Once steeped in us for another few months they might catch on and stop guessing. Anyway there were not enough respondents with POTS in the 1st scope. We look forward to the 2nd
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bicentennial
Senior Member (Voting Rights)
Ah, thankyou.
So that is the geography and history. The NHMRC appears to be informative and I appreciate its information. It also has some method to review the evidence, being approached in what looks like a weighty manner. But the College is not rushing to assist.
Maybe confounded by the fringe-rehab anomalies, exported to Britain from the USA around 1990. TheDePaulGroup informs us, by way of introduction, that was around the same time USA patient communities objected, aided by their professional community confirming the anomaly of denial.
Denial of scale. Denial of suffering. Denial of service. This is what I learnt from TheDePaulGroup.
Deterred in the USA according to @TheDePaulGroup. Unheard of in Italy, according to @Hoopoe. But how long has this been going on elsewhere, and where? Denial of service. Denial of scale. Eg:
The NHMRC Project Team 2025 said:
Gas-lit denial of suffering: “PEM is not suffered on exercise programs”.
- the perseverant new papers, stacked up to make a hash of the “evidence base”, insist that PEM is not suffered on exercise programs. Thing is, its not going away. So its been re-defined in the jungle.
I can’t recall who reported it. It was definitely reported on the most pertinent thread (Open: DSQ–PEM Survey), maybe reported by @Nightsong. Which mash-up paper assayed this predictable hack job? My browser hangs, I will not close it, too much info to lose so I can’t go get the link. Who can?
Such PEM pretension should be linked here before it goes even further. It had 30 British years: 10 years to colonise by Guideline, 20 years of subsidy. Re-homing itself in a hurry again. Its boycott became mutual. I must rely on NHMRC, already being distinctly avoided. Scrutiny can but continue
bicentennial
Senior Member (Voting Rights)
This NHMRC is a beginner and learning on the job. Its Project Team Report explained in their 2025 Scope Survey: one lesson is how to get more uptake-intake (reply), if not through medical Colleges.
* more replies from more of those who don’t use 8-page profiling Tools:
- eg did not use DePaul’s PEM Tool
- eg did not use Australia’s NHMRC Practitioner Guideline Survey Tool (NHMRC Team’s 8th page was only for permission to publish)
* and more replies from more of the professional stakeholders:
- around 40 replied that they mostly do want a !! factsheet !! and summary
* and more replies from more patient stakeholders being reconditioned by the 3 correlated conditions:
- Long Covid with pride of place
- then O.I “also known as POTS, so aka POTS (Orthostatic Intolerance)”
- then Fibromyalgia being such old hat it got left behind to trail in behind, but was it not the first known associate?
Does this mean Australia still has no stand-alone Practitioner Guidelines on Fibromyalgia, O.I, or Long Covid, not even in the pipeline? If none, then is this because these conditions are also “under-represented” or “dismissed”?
Why do some say O.I is now a symptom of M.E, but others say its co-morbid, a known associate? If O.I is a symptom then is that a core symptom except for any outliers, or a considerable subgroup? Why say it causes cerebral hypo-perfusion, when others say its caused by cerebral hypo-perfusion? Is cerebral hypo-perfusion co-morbid or a proven, or indicated, or accepted symptom, or subgroup?
How is the Council supposed to collate opinion, experience, literature and proof, on such an eternally fluid profile always masked and up for grabs? With an engagement problem to start with? So do we have available professional and patient experts to explain what they reckon might be the problem(s) causing such a tiny response from all except 915 Patients (16 patients with a dual role)
Only 61 Carers, only 9 Kith and Kin. Only 62 Clinicians, 22 with a dual role. Only 14 Researchers, 4 with a dual role, 3 unspecified, 11 researching occupational therapy, autonomic dysfunction, molecular and cell biology, immunological disturbances, gut health and exercise physiology. Also 10 odd-bods with no role to mention. But surely Australia can muster more than 1087 replies.
How might this compare with the initial scoping response to a NICE Guideline? What gives? So many possible reasons for not reaching - or not engaging - the different professional cohorts, and the different patient cohorts, at the scales involved. Is this an Australia thing about surveys, or an 8-page thing, or a wheelspin in the questionnaire, an NHMRC shortfall, or a professional shortfall?
Obviously it is professionals who need the most help to enter data on a survey. Patients too, but for each professional reply there were 18 patient replies (I’m not AI, nor AI-assisted, but I too may err).
The devil is in the detail. So people tend to tune out devilish detail and of course this got automated.
I observe that sedentary professionals are conditioned to enter data on automated software tools all day sending pre-formatted tasks into the loop of workstations. No-one takes more than 3 minutes to enter one task, at most 5 minutes, hence the total illiteracy for further reading and writing which we encounter and cannot yet counter. Computers rely on clients to repeat detail at each node in the loop
* more replies from more of those who don’t use 8-page profiling Tools:
- eg did not use DePaul’s PEM Tool
- eg did not use Australia’s NHMRC Practitioner Guideline Survey Tool (NHMRC Team’s 8th page was only for permission to publish)
* and more replies from more of the professional stakeholders:
- around 40 replied that they mostly do want a !! factsheet !! and summary
* and more replies from more patient stakeholders being reconditioned by the 3 correlated conditions:
- Long Covid with pride of place
- then O.I “also known as POTS, so aka POTS (Orthostatic Intolerance)”
- then Fibromyalgia being such old hat it got left behind to trail in behind, but was it not the first known associate?
The NHMRC Project Team regarding other conditions amongst the 1087 replies said:
Does this mean Australia still has no stand-alone Practitioner Guidelines on Fibromyalgia, O.I, or Long Covid, not even in the pipeline? If none, then is this because these conditions are also “under-represented” or “dismissed”?
Why do some say O.I is now a symptom of M.E, but others say its co-morbid, a known associate? If O.I is a symptom then is that a core symptom except for any outliers, or a considerable subgroup? Why say it causes cerebral hypo-perfusion, when others say its caused by cerebral hypo-perfusion? Is cerebral hypo-perfusion co-morbid or a proven, or indicated, or accepted symptom, or subgroup?
How is the Council supposed to collate opinion, experience, literature and proof, on such an eternally fluid profile always masked and up for grabs? With an engagement problem to start with? So do we have available professional and patient experts to explain what they reckon might be the problem(s) causing such a tiny response from all except 915 Patients (16 patients with a dual role)
Only 61 Carers, only 9 Kith and Kin. Only 62 Clinicians, 22 with a dual role. Only 14 Researchers, 4 with a dual role, 3 unspecified, 11 researching occupational therapy, autonomic dysfunction, molecular and cell biology, immunological disturbances, gut health and exercise physiology. Also 10 odd-bods with no role to mention. But surely Australia can muster more than 1087 replies.
How might this compare with the initial scoping response to a NICE Guideline? What gives? So many possible reasons for not reaching - or not engaging - the different professional cohorts, and the different patient cohorts, at the scales involved. Is this an Australia thing about surveys, or an 8-page thing, or a wheelspin in the questionnaire, an NHMRC shortfall, or a professional shortfall?
Obviously it is professionals who need the most help to enter data on a survey. Patients too, but for each professional reply there were 18 patient replies (I’m not AI, nor AI-assisted, but I too may err).
The devil is in the detail. So people tend to tune out devilish detail and of course this got automated.
I observe that sedentary professionals are conditioned to enter data on automated software tools all day sending pre-formatted tasks into the loop of workstations. No-one takes more than 3 minutes to enter one task, at most 5 minutes, hence the total illiteracy for further reading and writing which we encounter and cannot yet counter. Computers rely on clients to repeat detail at each node in the loop