Australia’s medical research council questioned on ME and CFS committee

By Sasha Nimmo

Australia’s National Health and Medical Research Council (NHMRC) answered questions from Greens, Centre Alliance and Labor senators at Senate Estimates budget hearings. Senator Griff asked if they would add experts in biomedical research to the ME and CFS advisory committee. Senator Steele-John asked if it would be concerning if a member of the panel thought that ME or CFS patients could be cured by aqua aerobics. Senator Watt asked if the NHMRC will specify criteria or guidelines to be used in the studies it funds.

Prof Anne Kelso, CEO of the NHMRC, was asked about how the Myalgic Encephalomyelitis and chronic fatigue syndrome advisory committee was selected, since nominations were not sought. She believes it is a good mix on the committee, after the NHMRC asked the advice of medical colleges and patient organisations.

“We have formed an expert committee which is made up of people with a particular interest in this sort of issue and with the type of clinical and biomedical skills that are necessary to understand the type of clinical situation,” said Prof Kelso.

When Senator Griff asked if the NHMRC would consider adding members with biomarker and molecular experience, given the importance of biomedical research and the limited experience of the committee, Prof Kelso said she would need to take the question on notice. He noted that on the USA’s equivalent committee, all members have biomedical research expertise.

Prof Kelso said there were two experts, Prof Sonya Marshall-Gradisnik and Prof Andrew Lloyd with research experience, saying he has a ‘long term interest in the relationship between virus infections and chronic fatigue syndromes and is a clinical immunologist and would have a very good understanding of this area.’  While Lloyd has received much of the NHMRC’s funding for CFS research, he has said 90 percent of his work has nothing to do with CFS, it is mostly hepatitis C, and the work he does do on CFS is to rollout CBT and GET training despite the evidence against it.

Senator Griff asked if they sought public expressions of interest for the committees. Prof Kelso said no, but it was possibility and certainly worth considering.

Senator Watt asked, in writing, how the NHMRC planned to include the views of Australia’s leading scientists and clinicians. The NHMRC answered that they had an advisory committee of experts and referred him to the NHMRC’s website.

He asked about making the process more transparent. Again the NHMRC referred him to the same page of their website.

Psychological and physical ‘cures’
Senator Steele-John also raised the issue of the psychological and physical cures which is concerning to many people.

“Could I just ask you whether you would agree that it would be concerning if a member of the panel thought that ME or CFS patients could be cured by doing things like aqua aerobics?” asked Senator Steele-John, referring to committee member Assoc Prof Broadbent’s five week aqua aerobics trial, which she plans to expand.

“I am aware that it’s a controversial topic and that there are different views expressed about the contribution of different components, if you like, or different possible contributors to the symptoms. But this committee is working from the starting point that this is a real issue—it’s a real clinical issue that needs to be taken seriously. Its purpose is to provide advice to NHMRC about how we can best support research or guidelines or whatever is the most useful way that we can contribute to addressing this problem in a realistic way in the community.

Mitochondrial function
Senator Griff asked if some of the committee had experience in markers for poor mitochondrial function.

“I understand that it is related to poor mitochondrial function, so I would have thought that it would have been important to have that level of expertise on the committee as well,” said Senator Griff.

“I’m not aware of whether that has been identified as particularly important for ME/CFS, but I can find out about that,” said Prof Kelso.

“The importance of this committee is not necessarily to have a deep understanding of all of the possible mechanisms that lead to ME/CFS but to be able to give us the type of advice on what the best way we could invest in this area would be, whether it’s through a targeted call for research or it’s through the need for clinical guidelines. Sometimes what one then needs is a range of expertise that extends beyond the specific biology of a syndrome,” said Prof Kelso, adding that she would provide the senator with more information.

The advisory committee’s report will be ready by the end of the year, then the NHMRC will conduct a targeted or public consultation on the committee’s draft advice to ensure the views of scientists, clinicians, patients and carers are considered prior to formally providing the advice to Prof Kelso.

Targeted call for research
Senator Steele-Jordan asked for an update on the NHMRC’s targeted call for ME and CFS.

Prof Kelso said the NHMRC haven’t made a decision to hold a targeted call for research, pending advice from the advisory committee.

“This committee is tasked with giving us advice on the best way we can support research or other needs that are appropriate for NHMRC to contribute to for this disease. So it may not be a targeted call for research, but it’s equally possible that it will be. Then we’ll await their advice, if it is a targeted call, on what the scope of that call would be.”

The NHMRC website says a targeted call for research proposal on ME and CFS has been received and is under consideration.

Definition of ME
Senator Watt asked if the NHMRC will make it a requirement that ME research it funds will need to use a defined criteria/guidelines.

The NHMRC stated they are ‘aware of the critical need for consistent diagnostic criteria to be used in research and clinical guidance on this complex condition’.

“The National Institutes of Health in the United States has funded a Data Management Centre (DMC) to ensure that data generated from ME/CFS research is consistent. The DMC recently conducted public consultation on common data elements (defined criteria) to be used by researchers at the start of any ME/CFS study. The Committee will discuss this further as it develops advice for the NHMRC Chief Executive Officer on the research and clinical guidance needs for ME/CFS.”

You can read the full transcript (begins on page 40) or watch the hearings.

Read more about who is on NHMRC’s advisory committee and their expertise.