Back to All News

#estimates - diagnosis and treatment of Myalgic Encephalomyelitis, or chronic fatigue syndrome

Estimates & Committees
Scott Ludlam 22 Oct 2015


CHAIR: Senator Ludlam.

Senator LUDLAM: I have a couple of questions that are general for this section but also would like to ask the NHMRC to come forward if they are in the room. National Health and Medical Research Council

Senator LUDLAM: Thank you for joining us. I am not sure whether this issue has been raised yet in estimates thus far. This might be a little bit new to you. I have a couple of questions relating to diagnosis, cure, management plans and treatment of myalgic encephalomyelitis, which is maybe more commonly known as ME or chronic fatigue syndrome. Is this the first time this has been put to you?

Prof. Kelso: It is certainly the first time it has been put to me, Senator.

Senator LUDLAM: Alright, here it goes.

Prof. Kelso: I could find out whether we are funding any research in that area. I do not know off the top of my head. I am not sure if we have a breakdown exactly of ME here. But we certainly—

Senator LUDLAM: I believe there is a very small amount of funding. So, while you look into that, I might just put some general questions to the secretary. I will put these to you,

Mr Bowles: in terms of outside NHMRC grants, is there any Commonwealth support for people with this condition that you are aware? First of all, I presume you are aware of it?

Mr Bowles: I am aware of the disease but I am not aware that we do anything specific in ME. I would have to take it on notice to see if we do anything. I cannot think of anything I have seen while I have been around.

Senator LUDLAM: Yes, I have not been able to come up with anything. Can you go back and check—about any kind of support at all? I think there is a very small amount of support for a group in Victoria, which comes out of the state health department. That is actually just about all I have been able to find. There is a little bit of work done out of Griffith in Queensland. Do you have a sense of how many people are affected?

Mr Bowles: No, I do not.

Senator LUDLAM: I was perusing the Emerge Australia website a short time ago. They put modern estimates at 0.4 to 2.6 per cent of the population. In an Australian context that would be between 92,000 and 598,000 people. They also say on their website that there is no collective diagnosis, there is no cure and there is no management plan. I am struggling to think of a cohort of people in our community that large for whom there is so little. That is why I fronted up tonight, to see if you can help out. Have you been able to find anything in your file?

Prof. Kelso: Yes, thank you. I have just been advised that the NHMRC has provided a little over $2 million in funding between 2000 and 2013. So you are correct of course that the amount of money over all that has come from NHMRC is quite small into this area. I think it is very important to point out the way funding is delivered from the NHMRC. The great majority of it is in response to applications from investigators, and so they are then all competing for money on an equal footing, whether they are cancer researchers or ME researchers or multiple sclerosis researchers or whatever. The very small funding is, therefore, highly likely to reflect a very small number of applications. So it may be that we do not have a significant body of researchers. We can allocate some of our funding to targeted areas of research, so areas of substantial and national significance will get special funding from time to time. Up to this point ME has not been one of those.

Senator LUDLAM: Who gets to decide when something is characterised in that way?

Prof. Kelso: It is a discussion; it can be suggestions that come from outside, maybe from the public. They are issues that might be discussed at that council of the NHMRC or the research committee of the NHMRC. But the types of areas that have been covered by targeted calls for research have been, for example, prevention of youth suicide in young Aboriginal people, or foetal alcohol syndrome in Aboriginal people—very clear issues of national significance that we invest specific funds in from time to time. Even so, those funds tend to be on a rather small scale, and the great majority of NHMRC funding is in response to investigator initiator applications.

Senator LUDLAM: Okay. What was the phrase that you used just before—'national significance'?

Prof. Kelso: Yes, we define targeted calls for research, which will generally be in areas of national significance, yes.

Senator LUDLAM: I guess the other criteria would have to be national significance and sustained neglect— that is, work was not already being done in areas such as those you just named.

Prof. Kelso: Indeed. And of course there are many such areas. So these are very difficult decisions that are made from time to time.

Senator LUDLAM: This is still helpful.

Prof. Kelso: Good.

Senator LUDLAM: Those are decisions that are made by the NHMRC board?

Prof. Kelso: Yes. On the advice of the research committee and council.

Senator LUDLAM: Okay. So there are two scenarios that come into my head. One is that there could be a high number of low-quality research proposals that did not make the cut and did not seem worth pursuing; the other is, as you have suggested, a small number, and you have funded a small number.

Prof. Kelso: Yes. Those are the two broad extremes, but it could be something in between and it may be variable from time to time. I do not know personally the researchers who are involved, so I cannot comment.

Senator LUDLAM: Do you have at hand a rough description of what sort of research is being funded by you guys?

Prof. Kelso: No, I do not—on ME? Wednesday, 21 October 2015 Senate Page 117 COMMUNITY AFFAIRS LEGISLATION COMMITTEE

Senator LUDLAM: Yes.

Prof. Kelso: We can certainly look into that and get back to you.

Senator LUDLAM: I presume that kind of thing is not going to be commercial in confidence or related to national security issues.

Prof. Kelso: If it was, for example, a project grant or several project grants, they will have titles and descriptions that we can certainly release. They are in the public domain. We cannot provide information about unfunded applications, but we can certainly provide information about funded applications.

Senator LUDLAM: Could I ask you to pop that on notice for us if you do not have it with you at the table.

Prof. Kelso: Yes, of course.

Senator LUDLAM: One of the things that has been raised with me is that, as a consequence of the condition itself and what people suffer, it does not have very high visibility in the community because the sufferers are not very active a lot of the time or their activity is highly contingent and unpredictable and people do not know when they are going to be well or not. Obviously, there are a very wide range of symptoms and the symptoms vary greatly between people. As a result, there is not a really high profile or visible set of peak bodies arguing and clamouring for their space at the table. Maybe this is not within your remit; this might be better put to the department, or perhaps I should look to the states, but I wonder whether, at a federal level, you can help advocacy or those sorts of groups to be able to raise their profile a little given the unusual circumstances faced by people with this condition.

Dr Southern: Certainly the department has just been out to market for grant funding for peak bodies. That approach to market has closed, but it was widely known in sectors that there was an opportunity to seek grant funding for peak bodies. So there is a possibility, of course, that that might have occurred for the ME peak body—I do not know the name of the peak body. There are sources of funding for those sorts of organisations.

Senator LUDLAM: I do not want to detain the committee—this is probably stuff that I could find out offline—but, on notice, if you like, so that we can move on, would you let us know where I can find a little detail about that particular category of funding. I presume that is an annual round that opens and then closes.

Dr Southern: It is not necessarily annual. We have opened the approach to market this year. What I do not know is whether it was for single-year funding or longer. It was for a longer period, so it is not an annual grant round.

Senator LUDLAM: What is the approximate total amount of money that you are able to see some of these small groups with?

Mr Bowles: While Mr Cormack is finding that, one other option, Senator, might be to talk to the Public Health Association. They might be a good group to talk to as well. The CEO of that is Michael Moore. You could have a chat to him. He might have some idea about how that plays out in his world.

Mr Cormack: The figure is $31.2 million over four years.

Senator LUDLAM: Does that mean, if you are a group who either missed out or did not know that that was happening, you have to wait another four years before you can come to the table?

Mr Cormack: It was an open approach to the market, and we do that in a way where we publicly advertise it. It is generally meant to lock in a known funding round for a set period of time. So it is unlikely that we will be running some interim arrangement between now and when this funding comes up for renewal in 2018-19.

Senator LUDLAM: I might try to twist your arm and talk you into making an exception, but that is probably a conversation for another time. Thank you very much for your assistance. If anything occurs to any of you after the committee hearing that might assist, I would greatly appreciate it.

Back to All News