Parliament of Australia - petitions and questions

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Parliament of Australia

from the Minister for Families and Social Services, Mr Fletcher

Thursday, 4 April 2019
Page: 87

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Dear Mrs Wicks

Thank you for your email dated 7 December 2018 concerning a response to the petition PN0389 requesting that the Australian Government work with Emerge Australia to support people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) with access to the National Disability Insurance Scheme.

The National Disability Insurance Scheme (ND1S) provides supports for people who are accepted as participants and meet the disability criteria under section 24 of the National Disability Insurance Scheme Act 2013 (NDIA Act).

In order for a person to be assessed as meeting the disability access requirements to the NDIS, the NDIS delegate needs to be satisfied on the information provided that the individual meets the following criteria:

a) has a disability that is attributable to one or more intellectual, cognitive, neurological, sensory or physical impairments or to one or more impairments attributable to a psychiatric condition;

b) that the impairment or impairments are, or are likely to be, permanent;

c) that the impairment/impairments result in substantially reduced functional capacity to undertake, or psychosocial functioning in undertaking, one or more of the following activities: Communication, Social interaction, Learning, Mobility, Self-care, Self-management;

d) the impairment or impairments affect the person's capacity for social and economic participation; and

e) the person is likely to require support under the NDIS for the person's lifetime.

The NO1A acknowledges that there is conflicting evidence regarding the permanency and best management of ME/CFS. Currently, the NDIA continues to use the

Australian Guidelines on diagnosis and management. Based on these guidelines, it cannot he considered that every person diagnosed with ME/CFS will go on to have a permanent and lifelong impairment. It would, therefore, not he accurate or appropriate to include ME/CFS on List B.

List B conditions are, by the nature of their diagnosis, always considered to be permanent and lifelong conditions but have varying impacts upon each individual. The available research on ME/CFS indicates that due to the natural progression of the condition, a great majority of individuals recover without intervention over weeks or months.

The NDIS is not involved in advising or developing clinical guidelines. 1 understand that the National Health and Medical Research Council's ME/CFS Advisory Committee provides advice to the organisation's Chief Executive Officer on current needs for research on ME/CFS, and clinical guidance on diagnosis and treatment. The Advisory Committee met throughout 2018 and will submit a draft report following a forthcoming round of public consultation.

Please note that there is no requirement that a condition, including ME/CFS, be listed on any of the lists of conditions in order for eligibility to the NDIS to be determined. The lists are in place only to assist delegates when processing the high number of applications to the NDIS by highlighting some of the more common conditions that are considered to always meet certain aspects of the NDIS Act Eligibility Criteria. The NDIS has been in contact with Emerge Australia for discussions on how the NDIS may support persons with ME/CF.

Thank you for raising this matter with me.

Yours sincerely

from the Minister for Families and Social Services, Mr Fletcher
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https://parlinfo.aph.gov.au/parlInf...dr/84457b57-5639-432a-b4df-68b704cb3563/0032"
 
the existing "Australian (medical) Guidelines" mentioned are still based on the GET/CBT/hysteria model.

it will probably take some time and a lot of effort, for the NHMRC report to be finalised, for the existing medical guidelines (GET/CBT/hysteria model) to be updated with actual science, and for the NDIA to get their heads around the actual science (eg that recovery from post-viral fatigue in first 6 months is high, but it's not the same beastie as ME/cfs (CCC/ICC) which is usually permanent)

the clever people at Emerge Australia, and many many other advocates, are already achieving miracles - i believe we WILL get better support.

hopefully, the end result will be List B, similar to Multiple Sclerosis.

[edited to remove comments about NDIA 'permanent disability' requirement - please refer to comment below from Simone]
 
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The available research on ME/CFS indicates that due to the natural progression of the condition, a great majority of individuals recover without intervention over weeks or months.
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Well that's just a blatant lie. Most of the research shows remission, not recovery, rates of 5%.

Controversial opinion here but lying about disease prognostic is way over there on the unethical side of things and possibly illegal. Governments are supposed to make decisions based on reality, not the personal gut feeling of a few people who have managed to worm their way into influence.
 
A previous letter which was being sent out demonstrated a clear misunderstanding about recovery and diagnosis. It said, “One Australian study followed 253 patients diagnosed with chronic fatigue, and found that only approximately 11 per cent continued to meet diagnostic criteria at six months”.

Of course, we know this makes no sense, because you have to have been sick for six months to meet the criteria at all. What they’d done was misinterpreted the Dubbo study results, which found that, at six months, 11% of people had failed to recover from an initial infection and had met the criteria for ME/CFS. The study said nothing about recovery from ME/CFS, just how many people developed ME/CFS post-infection.

Emerge Australia has explained their mistake to them, though I’m not sure the message has gotten through.

The bigger issue with NDIA is permanency, and how to prove it.

There is a quote from the Australian 2002 guidelines (as much as we hate them), which some are using with their NDIS applications. There are many who this won’t help, which is also problematic, because we don’t want NDIA to develop procedures which are going to exclude people with ME/CFS who are functionally impaired and in need of support.
“In people who have been severely disabled and unable to work for more than five years, the probability of substantial improvement within 10 years is less than 10%–20%. This may be regarded as “permanent disability” for medicolegal purposes.” (p. S47)
 
The Minister’s response was predictable and reasonable, of course a government department will follow government guidelines.

Here’s more on Emerge and ME Australia’s recent meeting (which I participated in) with the NDIA where permanency was discussed:
https://meaustralia.net/2019/03/30/disability-agency-consults-on-me-and-cfs/

More recent government reports, such as the 2016 Parliamentary chronic illness report used figures from Emerge stating “around 25 per cent [are] so profoundly affected by the condition they don’t recover”.
https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health/Chronic_Disease/Report

And, while it is yet to be delivered to government, the draft advisory committee report says 99% recovery rate:
https://meaustralia.net/2019/03/25/...recover-from-chronic-fatigue-syndrome-and-me/

Here’s how bad the Australian guidelines really are:
https://meaustralia.net/2018/11/30/...n-chronic-fatigue-syndrome-guidelines-and-me/
 
Simone said:
Of course, we know this makes no sense, because you have to have been sick for six months to meet the criteria at all. What they’d done was misinterpreted the Dubbo study results, which found that, at six months, 11% of people had failed to recover from an initial infection and had met the criteria for ME/CFS. The study said nothing about recovery from ME/CFS, just how many people developed ME/CFS post-infection.

)
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No, the International Criteria for ME doesn’t specify 6 months before meeting the criteria. It’s referred to as the acute phase.
I was diagnosed with ME after 4 months, for example.
 
rvallee said:
Well that's just a blatant lie. Most of the research shows remission, not recovery, rates of 5%.

Controversial opinion here but lying about disease prognostic is way over there on the unethical side of things and possibly illegal. Governments are supposed to make decisions based on reality, not the personal gut feeling of a few people who have managed to worm their way into influence.
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Yes, it is clear they are ignorant about the reality for most patients. CFS is not merely post-viral-fatigue...
 
MyalgicE said:
No, the International Criteria for ME doesn’t specify 6 months before meeting the criteria. It’s referred to as the acute phase.
I was diagnosed with ME after 4 months, for example.
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True, but I was referring to the Dubbo studies, which used Fukuda and which they’d misinterpreted.
 
How could the committee’s report misinterpret the Dubbo study when a Dubbo study author is on the committee?

I don’t think they are talking Fukuda CFS, as it’s the same language used in the Australian CFS Criteria.
 
MyalgicE said:
How could the committee’s report misinterpret the Dubbo study when a Dubbo study author is on the committee?

I don’t think they are talking Fukuda CFS, as it’s the same language used in the Australian CFS Criteria.
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This isn’t about the NHMRC committee’s report. It’s about Minister Fletcher’s response to Emerge Australia’s petition. The previous Minister, Dan Tehan, was sending out letters to people which included a misinterpretation of the Dubbo studies.
 
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