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.
 
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