By Sasha Nimmo

Australian research is underfunded and the government’s clinical guidelines are outdated so the ME and CFS advisory committee is welcomed. It provides an important opportunity to call on the government to fund biomedical research and to give Australian doctors desperately needed clinical guidance.

The advice from this committee will determine if diagnostic and treatment guidelines are updated and where Government research funding should be directed. For people with ME/CFS the outcomes from this committee will influence the medical treatment they receive, how easy it is to access to the NDIS and what income support payments people can receive.

This is a valuable opportunity, if the ME and CFS advisory committee avoids the trap of endorsing outdated, disproven theories. If the right decisions are made, it will direct funding to developing a diagnostic test, theraputic treatments and a cure.

To make the most of this opportunity and to receive support from patients, health officials and researchers, the committee needs to:

  • Commit to an open and transparent process
  • Outline how it will include the view of leading Australian scientists and clinicians who are not members of the committee
  • Explain how international processes to change/review guidelines will be used to inform advice to the NHMRC Chief Executive
  • Advise how it intends to evaluate highly questioned science  (i.e. graded exercise therapy, cognitive behavioural therapy and studies that failed to use criteria)
  • Commit to requiring future publicly funded research using defined criteria/guidelines

How this can happen

Open and transparent process
To deliver an open and transparent process the advisory committee should consider:

  • Publishing an annotated agenda and agenda papers two weeks ahead of meetings
  • Publishing the minutes and action items of meetings within a week of the meeting being held.

Currently no notice is given of upcoming meetings and scant information is provided afterward. There is no current option to subscribe to receive information.

Incorporating views of leading Australian scientists and clinicians
It would be disappointing if the expertise of the following Australian scientists, who are considered to be making important progress in researching ME, was not included in this process:

  • Professor Paul Fisher, Head of Discipline of Microbiology, Latrobe University
  • Dr Sarah Knight Senior Paediatric Neuropsychologist at Murdoch Children’s Research Institute
  • Dr Brett Lidbury Associate Professor at  Pattern Recognition and Pathology at ANU
  • Mr Christopher Armstrong, Bio 21, Molecular Science and Biotechnology, University of Melbourne
  • Dr Henry Butt, Microbiologist and Director of Bioscreen
  • Dr Paul Gooley, Department of Biotechnology and Molecular Biology, University of Melbourne
  • Dr Don Lewis, Director of CFS Discovery Clinic
  • Dr John Whiting, clinician – physician, expertise in ME
  • Dr Richard Kwaitek, clinician – rheumatologist and medical researcher
  • Dr Neil McGregor, Medicine Dentistry and Health Sciences, University of Melbourne and former editor of the Journal of Chronic Fatigue Syndrome

International work on revising guidelines
To deliver on its terms of reference, the committee’s starting point should be understanding the science and rationale behind the changes to the US and Norwegian guidelines. It should also understand the process and science being used to review the UK guidelines. To this end, the advisory committee should approach the NHMRC to contact government officials in these countries to obtain the relevant information.

Assessing the place of Graded Exercise Treatment and Cognitive Behaviour Therapy and studies that failed to use criteria
As there are members of the panel who are proponents of GET and CBT, at a time when this science is known to be harmful and considered outdated, it is important that the panel sets out how it will consider this science. In doing so, it will be important to advise how it will avoid or treat studies that have been forced to revise their results (i.e. PACE). This should include setting out how the advisory committee will consider systematic reviews that are based on erroneous results, such as the Cochrane review.

There are also members of the panel who have conducted studies that relied on self-identification, GP diagnosis, or very broad criteria. It is important the panel sets out how it will consider studies without identified criteria in forming their advice to the NHMRC.  A 2016 Australian study reported that almost 2 in 5 were incorrectly diagnosed with CFS and ME, and more than two-thirds did not meet the International Consensus Criteria for ME.

The advisory committee should consider whether to adopt the approach used by the United States Agency for Healthcare Research and Quality (AHRQ). In the systematic review of diagnosis and treaatment of ME/CFS conducted by the AHRQ they disregarded studies that used the Oxford criteria, as this was found to be too broad and included people who had alternative fatiguing illness or who had illness that resolved spontaneously over time.

Future research
In proposing future research it is important that for reasons of comparability and accuracy that it be a requirement to use specified criteria/guidelines. A paper by Frank Twisk outlines how different criteria identifies different patient cohorts. The Jason et al paper in response to the IOM new SEID diagnostic criteria suggested there may be four groupings of patients:

  1. People with fatigue> 6 months which cannot be explained by medical or psychiatric condition
  2. People whose fatigue can be explained by a medical or psychiatric condition
  3. A more specific category posited by the IOM, Canadian Clinical Case criteria, ME-ICC, and a more empiric approach
  4. A smaller even more impaired group proposed by Ramsay

In commissioning any future research, it is important to include the more severely impaired group who are too ill to leave their houses or care facilities.

Australia has world-leading scientists and their work must be funded so we can keep them working in the field, helping not only Australian patients but millions around the world.

To provide feedback or views to the NHMRC, email ME_CFS@nhmrc.gov.au