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

Dolphin said:
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.

​

  • 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.
Relevant publications:

  • 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):ofab440. 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.
Speeches/lectures:

  • 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).
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It would be helpful, I think, if any specific critiques of the papers above could be provided in this thread.
While the titles alone tell a story, the content of the articles is where the NHMRC will look for evidence.
 
From the referenced 2020 narrative review in Med. J. Aust. - seems deeply problematic in its coverage of CBT & GET:
Cognitive behaviour therapy (CBT) is a commonly trialled intervention. In the context of CFS, CBT is best considered as a multifaceted strategy to identify and modify illness behaviours and beliefs to reduce symptom severity and improve functional capacity.84,85 Beliefs that should be challenged include that more sleep will alleviate the fatigue, that avoiding activity is preferable, and that ignoring symptoms and simply pushing beyond activity thresholds will overcome the illness.
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The most recent meta-analysis of the four controlled studies of CBT, including the PACE trial, found no significant differences in physical function scores between intervention and control groups.67,86 However, this analysis excluded several high quality, randomised controlled trials with positive outcomes,87,88 and contrasts with an earlier Cochrane analysis, which suggested CBT was effective in reducing the symptoms of fatigue compared with usual care.89 More recently, with the aim of improving access to treatment, a randomised controlled trial of online CBT with clinical psychologist feedback showed a significant reduction in self-reported fatigue and psychological distress, as well as some improvement in physical functioning in those receiving online CBT versus the waitlist control group
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Graded exercise therapy (GET) has more consistent evidence for benefit, with a meta-analysis showing moderate quality evidence for improvement in measures of physical function and fatigue severity.67 In clinical practice, GET is preceded by activity pacing, which involves identifying thresholds beyond which the prolonged symptom exacerbation follows, and then “pacing” activities in order to maximise use of the constrained energy supplies. GET then involves planned, cautious increases in physical activity without causing sustained worsening of symptoms. A recently updated Cochrane review of eight randomised controlled studies indicated that in comparison to passive control (such as relaxation or flexibility), GET reduced fatigue at end of treatment with moderate certainty.91,92 However, the review indicated that it was not possible to exclude the potential for an exacerbation of symptoms in patients with severe illness.
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Simone said:
The members of the Guideline Development Committee, which will develop new clinical guidelines for Australia, have been announced today.

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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.
 
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.
 
Hutan said:
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.
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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.
 
Penelope McMillan said:
It would be helpful, I think, if any specific critiques of the papers above could be provided in this thread.
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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."
 
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