HALLMANN, Mr Geoffrey, Chair, ME/CFS Australia

[10:16]

CHAIR: Thank you, Mr Hallmann, for appearing before the committee today. We have the submission from the organisation, but I invite you to make some opening comments.

Mr Hallmann : If I may, I'll begin where I didn't intend to begin which is to follow on from some of the comments that were made in the previous submission—forensically, as solicitors. I am a former solicitor. I've done PhD research at SCU in ME/CFS. I've done public health and clinical epidemiology as well.

I have personal experience in regard to independent assessments from the past 20 years being in the workers compensation system in New South Wales. A comment was made about the reviewability of independent assessments. Within New South Wales workers compensation, if you appear before an AMS, they are presumed to be correct; you have no reviewability. And the problem with that, in my experience—I've been to, conservatively, 20 to 30 IMEs that told me I didn't have the condition and AMSs who have no active listening skills, quite often wrote the opposite to what you said, often left out what you said and came to conclusions that had no basis in reality—is you could not review them. On the couple of occasions that I've been allowed to record, the recording was given to the person on one occasion and he wrote an immaculate report. On another occasion, he forgot it was being recorded and, when called out, he denied repeatedly about half-a-dozen things until I provided the recording. If you do not allow reviews of independent assessments, if you don't allow them to be recorded, you are going to create a problem for applicants who are vulnerable, and that is grossly unfair.

The second thing that they covered was the effect of being on a workers compensation scheme. One of the things that they continually do to you—despite the quality of the individual giving the report, despite the quality of the evidence being provided—is they deny. But they don't just deny. They deny the things that you require to either sustain or improve and that causes a spiral down. It not only affects you as an individual, it affects your family, it affects relationships, it can destroy families and relationships and it can result in suicide, and has resulted in suicide.

From those two perspectives—as forensic as it was from current solicitors who have never been in that position—yes, there is research with regard to the workers compensation scheme and the intersection with individuals. I think it comes from Melbourne University. There's a thing called 'institutional dependence', whereby people are dependent on the institutions that provide them with access to workers compensation, disability pension and various other things that help sustain them, because they have no other choice. They lose their privacy and their ability to make their own decisions, and that creates a trauma in itself. That trauma flows not only to that individual and affects their condition but also to the people in their family and to the friends around them. It causes isolation. It causes stigma. There are a variety of implications that come with that whole process.

Thank you for that. It's one thing for an outsider to provide it; it's another thing for an insider to say that the experience is a lot worse than what has been done in research. That doesn't capture even close to the experience.

ME/CFS stands for myalgic encephalomyelitis/chronic fatigue syndrome. We believe it impacts around one per cent of the population—up to about 260,000 people. We're not sure exactly how many, because no prevalent studies have been done in the last 30 years—they haven't been funded. We are one of the most ignored, stigmatised and discriminated against groups in the community. There's a belief that it's fatigue or tiredness, and that it's able to be recovered from. The condition is permanent; it's very rare for people to recover. It has a number of causes, and it's rather pertinent, since we have COVID-19 flowing at the moment, to identify that one of the causes is post viral. Some of the research coming out is demonstrating that about five per cent of COVID sufferers are going on to have a diagnosis of ME/CFS—after six months, in the event that there is no other explanation for their ongoing, long-term symptoms, they are entitled to that diagnosis. That number is growing. Hopefully, it doesn't get out of control here, but it will continue to grow while ever we have cases.

We have a situation with the NDIS at the moment in which patients with ME/CFS are struggling to get onto the register because of the NDIS criteria that isn't overtly in the public arena. The statutory foundation for the application for NDIS has rules and criteria that we as the public see. Behind the scenes, they have a policy, which they don't call a policy but which they are applying to ME/CFS, that people do not and cannot see. It has come from one particular researcher. As a result, they are requiring people to do cognitive behavioural therapy and graded exercise therapy when there is no evidence base that demonstrates that this is likely to remedy the condition. There is no treatment for ME/CFS that is likely to remedy, cure or alleviate the condition, yet we have a situation within the NDIS whereby they are putting that requirement. If an individual goes and does graded exercise they can potentially end up in a situation of decline which they never return from. In order to satisfy the requirements of the NDIS—which shouldn't be there—they are potentially endangering themselves and causing more decline. This goes against the ethos of the system. These conditions are creating a barrier to people with ME/CFS entering the system.

One of the biggest problems we have is in the education and the knowledge of the practitioners out there, be they general practitioners, physicians, occupational therapists, physiotherapists or exercise physiologists. There is no true understanding of ME/CFS. They haven't been trained on it, because the guidelines are 19 years old and the current guidelines the NHMRC are looking at putting together are still in progress, and that's been going on for about eight years. There's no training of the people that the NDIS would require to do the independent assessments. So we already have a stigmatised group who potentially are going to be subjected to more stigma. Unfortunately, you cannot assess ME/CFS by being disability neutral because it requires a significant element of understanding of the condition so that a fair assessment can be given. It's one of these unique conditions whereby an assessor seeing a person on the day is not the methodology for assessing an individual when that whole preparation for that person to see you, if they can see you, involves preparing and having the energy and reserve to go and see you and then take two, three, four, five, six, seven days to a month to recover.

There are groups within ME/CFS who are bed bound and home bound. There are people who are unable to communicate. They can't tolerate light. They're in a darkened room. They cannot tolerate sound, light or conversation or, indeed, carry on a conversation. Twenty-five per cent of people with ME/CFS fall within being house bound and bed bound. So there is room for assessments of ME/CFS. But the current system doesn't allow those assessments, because they can't find doctors. But it shouldn't be compulsory. It should be optional, and the individual doing the assessment needs to be qualified and experienced in order to do the assessment. Otherwise what you get is a complete false picture of the individual.

Coming back to what I said earlier, there is a misconception behind ME/CFS, and it has been perpetuated for 35 years. The Australian government has spent approximately $1.7 million on the NHMRC in the last 20 years for ME/CFS research, and it primarily went to one person. That means approximately 25c has been spent on a condition that costs the community around $9 billion. It doesn't seem like good health economics to approach it that way.

From our perspective, the NDIS provides an opportunity for people eligible, if they're given a fair opportunity to enter the scheme, to reshape their lives. One of the benefits of the scheme is that it does capacity build. If that opportunity presents itself for people to have carers return to work or have the support that they need to go to work then there is an economic benefit to the community through that occurring. I note we have had a lot of discussion about the expense of doing that, but we don't seem to have much discussion about what the income or the revenue from capacity building is. ME/CFS is one of those conditions where there's potential for revenue to come back into the community if people are well supported, because carers are able to return to work—because those who are able to return to work have the ability to be supported back to work. So there are a lot of benefits that we see in supporting people with ME/CFS.

Presently we have a difficulty in that there are a lot of people that can't get on to the scheme because of the inherent barriers that have been put there. Additionally, when we as an organisation have sought to obtain funding to provide services to individuals outside of the scheme, we weren't funded. There was nothing available. So we have a community who not only are not able to get onto the scheme but also are not supported outside of the scheme. We have a national entity, the peak body for ME/CFS, which is not funded, but we're expected to turn up and make presentations to committees such as this and represent the interests of those with ME/CFS.

Bringing it back to the independent assessment: it's an important tool which—if done right and done on a voluntary basis in ME/CFS, appropriately for ME/CFS—offers an opportunity for people who can't get it through their current practitioners, because a lot of practitioners will not fill out the paperwork because they don't understand the condition. Worse still, the majority of practitioners throughout Australia, in 2021, either don't understand it, don't believe it or don't think it's as severe as it is. So we see that there's opportunity here. But ticking a box is probably not one of those opportunities. It still requires appropriate assessments with knowledge of the condition and the nuances of the condition. You can't take an individual based on one particular day, because, if you look at me today, you're not going to put me on the scheme. Now, if I go home today and I'm in bed for the next five, then you have a substantial impairment. Thank you.

CHAIR: Thank you, Mr Hallmann. I understand the last point you were making, which I think one of the previous witnesses referred to as—I'm trying to find it in my notes—the time-limited nature of the assessment and noted that it wasn't a longitudinal assessment. I'm just trying to find the word that she used to compare the two, but it doesn't really matter; I understand what you are saying.

Leaving that aside, can I just tease this out with you, because in the written submission it says:

Symptoms include overwhelming post-exertional malaise from mental or physical activity; dysfunctional sleep; pain; neurocognitive dysfunction; problems with memory; visual issues; sensitivity to touch and sound; problems with standing and balance; problems with body temperature and weight; problems with circulation; neurological dysfunction; and recurrent flu-like symptoms …

My question is: wouldn't an independent assessment that doesn't rely upon the knowledge of the practitioner, using one of the assessment tools, be more likely to indicate functional inability or disability than relying on a medical practitioner, for example, who has no knowledge of this condition or no real understanding of it and, therefore, may well be biased against the individual?

Mr Hallmann : Take an individual who has not, for example, been to a variety of specialists—because, unfortunately, there is a dearth of specialists in Australia; there are not many who understand this. Say they're somebody who has neurocognitive deficits and you're sitting down having a conversation with them. Again, I am a case in point. You can't tell those neurodeficits are there unless you have a neuropsychologist do an assessment of those deficits. You cannot see the brain damage in an assessment—unless, of course, you do a functional MRI or a SPECT scan. You cannot see the impact of post-exertional malaise, unless you subject that individual to a two-day cardiopulmonary exercise test and, potentially, mRNA gene expression. When you get to the bottom of what's going on and you start to explore, beyond looking at an individual—and this is the problem: unfortunately, it doesn't matter who it is, whether they're disability-neutral or independent; they look at an individual and they make an assessment on what they see on the day. They need to know what the condition contains. It is the same as multiple sclerosis, for example. NDIS in the last day or so had a posting about an individual who has MS who had just completed 100 park runs and a marathon. That person has MS and should be on the scheme. The fact that she does park runs and marathons is irrelevant, because that's not every day. That's not every minute. It is the same with ME/CFS; you're seeing a snapshot in time.

Unfortunately, without the background knowledge of the condition—the fact that it's variable, the fact that it has all these things—they make assumptions. Do they come up on a piece of paper or an instrument? No, they don't. A WHODAS for example, does give some insight, but a WHODAS is not to be used by itself. A [inaudible] can give you a little bit of insight. It might not. It depends on the day, the hour, the minute. The instruments that are being proposed do not capture that, cannot capture it, because, when you assess someone, do you assess them when they've done their two hours of preparation to go shopping, or do you assess them when they've come home after four hours, immediately hit the lounge and don't appear outside for another week?

We have limitations in the assessment. I take on board what you're saying; there are some potentials to look at this, but the trouble is that the majority of testing doesn't show anything. A neurocognitive test potentially takes one to two days, and the NDIA would like to assess someone in three hours. That's not going to generate what they need. It will generate an outcome that is a lottery. The fact that somebody gets to an office doesn't mean that they're capable of getting to the office; it means that they got to the office in order to be there for the assessment. It may have taken a week of rest in order to get there. They've got adrenaline running. The assessment itself is not a representation.

CHAIR: In my notes I've got cross-sectional versus longitudinal.

Mr Hallmann : And that certainly applies in ME/CFS. You have a variety of severities and a variety of presentations. Worse still, a person can fluctuate.

CHAIR: You're saying—without putting words in your mouth—that you could do a three-hour assessment now and that wouldn't necessarily reflect a three-hour assessment done tomorrow or the next day. There could be such a variation.

Mr Hallmann : Yes. That, unfortunately, is the limitation of doing those types of assessment. Whilst they provide a simplistic approach to it, having a medical practitioner who has seen an individual across multiple presentations over six months, 12 months or years—my medical practitioner has seen me across 18 years, so he's seen all variety of presentations—it's a falsity. It's going to provide results that more than likely in a lot of cases, if they present well, will result in them not getting into the scheme. I noticed that there was a lot of discussion about the supports and how it can prejudice supports. Well, our problem is that they don't even get to that point. It doesn't mean that everybody with ME/CFS needs the NDIS, but, when the majority of people can't even have ME/CFS recognised as their primary disability if they are on the scheme or, worse still, there are people on the scheme having AAT disputes simply because they will not even accept that ME/CFS deserves to be looked after, even though it's creating the majority of the impairment, it's a deficiency in the NDIS in terms of what they understand with this condition.

We are attempting to engage with them to help educate them, but they're working off the bat of something that's three to four years old. I've obtained an outline. They did not provide me the actual advice that they received, but the outline that they provided me had 19 references, in a condition where there are 10,000 papers. There were 19 references, one of which was already outdated by the time I got it. The other one is the Cochrane review, which was reviewed about a year after I got it. One is a guideline from the UK which is based upon a system in the UK, where there are centres for ME/CFS with experts in them—what they would call experts; I would differ. And it's been translated here on the expectation that that should apply here, where people are being expected to go to see somebody who has an expertise in ME/CFS. That just is unrealistic.

But there's another example: there is a guideline that was rewritten in a draft form in December of last year and was supposed to be released this year, and it will be released in August, where the recommendations—a 2007 one—that the NDIS is still currently relying on have been removed. In fact, they recognise that the treatments that they're recommending cause harm. We had the Cochrane review completely review the treatments for graded exercise therapy, and it resulted in a weaker position.

One of the conclusions that the NICE in the UK came to was that the literature base—which we as a community have been saying for quite a long time doesn't meet the standard, and they're holding it out as being level 1 research, randomised controlled studies, 'This is the bees knees; this is recovery'—doesn't meet the standard of low to very low in terms of quality, because there is inherent bias and outcome shifting. They changed the way that they did their studies in order to shape an outcome. It actually took an Australian guy to fight through the freedom of information to get the original data so that it could be examined, and he demonstrated that the original protocol did not show what they purported that it showed.

CHAIR: Mr Hallmann, I'm going to interrupt because we're running short on time. Senator Brown, do you have any questions?

Senator CAROL BROWN: Thank you for your evidence here today, Mr Hallmann. I just want to go to your organisation's call for independent assessments to be set aside. I just wanted to confirm that that is still your position now that the new minister has announced a brief pause on the rollout in order to allow time to consult further with the community and organisations.

Mr Hallmann : Absolutely. As it currently stands, with the proposed form, it needs to be set aside. It is not fit for purpose. It certainly would not help any person with ME/CFS be properly and fairly and objectively assessed for an NDIS application or for supports. In fact, I would go so far as to say it will result in the majority being removed. What's worse is, under the current system—and unfortunately this has occurred—if there is a change in the condition, the reassessment guidelines assume ME/CFS should be directed to a reassessment. We have had at least one situation where an LAC has had a disagreement with a person who was a participant and punitively reported that there was a change in the circumstances and it resulted in a reassessment being triggered. This is one of the problems in the system with ME/CFS. ME/CFS is not regarded as permanent, which is completely against the reality of the condition. In that situation, somebody—and in this particular case they even had a settlement at the AAT—within 12 months would be looking down the barrel of a complete restart and, under an independent assessment, would probably not get back on the system as it currently stands.

Senator CAROL BROWN: Have you had an opportunity to read the paper that was put out on personalised budgets?

Mr Hallmann : I haven't as yet.

Senator CAROL BROWN: I'm just flicking through it. There is a comment in the document, I believe, that does talk about removal from the NDIS, not particularly with regard to ME/CFS. It would be good if you could have a look at it, if you're able to, and provide some comment on the document additional to the submission that you've already put together, notwithstanding, I think I heard you say earlier, that your organisation doesn't receive any funds. You mentioned that a significant number of people with ME/CFS may be removed or perhaps have reduced support if the model that's currently proposed is introduced. Do you have an estimate of how many people that would be?

Mr Hallmann : On the system itself at the moment? No. We can't actually get that number. We have seen some freedom of information applications that were accepted, but it was for a very small time period—I believe it was less than a year—so we were only looking at maybe 20 people in that time period that were accepted. For a condition with this large a cohort, where the majority of people there is a justification for a lot of them to apply for the scheme, they aren't, because of the difficulty that others are experiencing. If it had been 2,200, I wouldn't have been surprised, but 22 people or thereabouts indicates that there is a problem.

Senator CAROL BROWN: Are you aware whether any people with ME/CFS have been involved in the pilot program for independent assessments?

Mr Hallmann : I'm not, but I am aware that there was, for example, a person with ME/CFS, who was used for promotion, who was saying how much she was looking forward to being on the system. She was from the ACT and it was in about 2013, from memory. One would expect that, if they're using an individual who has ME/CFS, they're contemplating that that individual with a particular condition was going to be eligible for the scheme.

Senator CAROL BROWN: I'm just interested in knowing whether, if someone with ME/CFS has not been part of the rollout, you'd be concerned that this cohort of NDIS participants remains untested in this model.

Mr Hallmann : I can say that, earlier, when the NDIS was first coming out, I certainly wrote to the NDIS and also to an organisation called Every Australian Counts. I encouraged them to represent the interests of ME/CFS because of the substantial disability. To put it in context, the dailies in respect of ME/CFS is about 0.76. It's severe. If you compare that to progressive MS, which is 0.67, I believe, there is substantially more disability in the moderate to severe end of ME/CFS than there is in multiple sclerosis. I do understand that the scheme has a definition for disability in terms of the mains that it carries, but people with ME/CFS fulfil these criteria and simply can't get past the barrier that they require treatment that is going to hurt them, treatment for which there is no evidence base that demonstrates that it is going to remedy or is likely to remedy the condition.

Senator CAROL BROWN: Thank you, Mr Hallmann. Thank you, Chair.

CHAIR: Mr Hallmann, thank you very much for your submission and for coming along and discussing it with us today. We appreciate it very much.

Mr Hallmann : Thank you.

Proceedings suspended from 10:50 to 11:03