NDIS: NDIA meeting with Emerge and ME Australia

We met with senior executives from the National Disability Insurance Agency, who administer the NDIS.
Here’s what happened in the meeting:

https://meaustralia.net/2019/03/30/disability-agency-consults-on-me-and-cfs/

 

Emerge is again asking the Minister about List B, but CEO Heidi Nicoll specifically asked his department already, in our meeting and already received an answer.

They explained to us they don’t use List B any more in assessing applications. It was something from when they first started up, produced by the Productivity Commission.

Heidi persisted and they explained they judge on a person’s level of functioning, not their diagnosis (and went on to explain further).

Not sure why Emerge keeps asking, so I’ve asked Heidi to clarify.

 

I don't know much about the Australian situation, but this from 2018 refer to 'list B' as if it's still an issue:

https://www.researchgate.net/publication/329444535_MECFS_NDIS_and_the_disability_hurdle

Do you know if the Larun Cochrane review is being used to justify claims about GET's efficacy with NDIA? How might this be affecting patients?

The above source says:

 

Hi @Esther12,

That paper from last year shows the NDIA hasn’t ever considered it because the evidence it has says ME nor CFS is permanent.

In the meeting with the NDIA they mentioned they use Australian reports, studies and experts.

The 2016 Parliamentary report stated only 25% were permanently affected, according to Emerge: https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health/Chronic_Disease/Report

(As soon as I read this report I contacted both the secretariat of the Parliamentary committee and Emerge and asked them to correct this misinformation. The wouldn’t change the report but at least Emerge removed that statement from their website.)

The recent advisory committee report just about to be delivered said 99% recovery within 2 years.

The Australian CFS guidelines say “the notion of “permanent” disability is problematic, as most people with CFS improve gradually, and some eventually recover.”

Until this erroneous information is corrected, there’s no chance of getting on List B and people will have a big challenge getting the NDIS.

 

I have been getting funding for home support for about a decade now. In two months that expires, at the end of the financial year. The funding program is cancelled. It is presumed that anybody needing help is on NDIS or can get NDIS.

I suspect that this notion of 99% recovery is conflating the concept of ME with post viral fatigue, in which most do recover. I also suspect that if they have this view, then the proposition could be made that anyone sick over two years should automatically be considered permanent.

 

Perhaps, but may be unlikely as the last government minister to take action was Wooldrige (Liberal) around 20 years ago.

 

I really hope you can find support.

Agreed, they are conflating the two. Unfortunately the advisory committee report says there’s a 50-80% rate of recovery in cases longer than 7 years.
https://consultations.nhmrc.gov.au/...fts/publicconsultationdraftceoreportmecfs.pdf

 

From the report -

Back then most cases of diagnosed CFS were probably just post viral fatigue. Fukuda is not a great definition either, nor is any where PEM is optional or not needed. In addition, that would be by seven years, not patients sick longer than seven years. That is consistent with post viral fatigue.

Post viral fatigue is very common, and I strongly suspect is what most doctors think of when they hear CFS, and doctors still say to me "ME, what's that?". Post viral fatigue has an almost complete recovery rate by about five years, and most recover in six months.

 

In the UK in the CMO report 2002 (I think) said that prognosis for recovery after 5 years was not good or words to that effect.

 

Australian psychiatrist Hickey was an author of the Fukuda as well as Australian CFS Criteria, which advises GPs to tell their patients they have ‘post infectious disease state’ as it might be “prudent” not to tell them they have CFS.

I’m interested to know where you get those figures on recovery from post viral fatigue? Are they Australian?

 

Not Australian, they are from various sources over the years on post viral fatigue. Its considered a self limiting condition, and this is generally known to doctors. A great many people get immune induced fatigue from a virus, which then goes away. How fast it goes away is the issue. With ME we get so many extra symptoms. This is, from (doh where did I read that) memory, discussed in many places.

Insistence on only using Australian research, if that is happening, should never be allowed to stand without challenge.

 

Thanks @alex3619, misdiagnosis is a big issue in Australia, fewer than a third diagnosed with CFS meet the criteria for ME (https://meaustralia.net/2016/05/26/australia-2-in-5-cfsme-diagnoses-wrong/)

Agreed, ME Australia provided the NDIA with up-to-date references to refute the myths and errors in Australian policies and studies.

It was important to find out what they are using and relying upon so we can get change happening.

 

I don't think there is much doubt that post viral fatigue and ME share similar causes. That does not make them the same thing. Indeed I think ME itself is most likely at least two different but very similar diseases. CFS of course is many diseases, maybe hundreds, especially if you include the likely misdiagnoses.

In cancer we have the modern classifications based on molecular pathology. I think ME will go the same way, but the first step is reliable diagnostic biomarkers.

 

On July 1 all my HACC services expire, as they require you to have applied to NDIS. However I recently found out, and I have not confirmed this from official sources, that if NDIS is rejected then HACC can be reinstated. This contradicts what I had heard earlier. I have applied for NDIS but expect to be rejected at the very early stages of the application. A letter of rejection is supposedly enough to reclaim my HACC standing. I will try to keep you informed if I can remember.

 

I sent a medical report in two weeks ago. Today they deny receiving it. In less than two weeks I lose all support.

 

Good luck with everything Alex. Sorry it's so rubbish.

 

Hi, the support company can offer me a different support package. Its slightly less hours but I still get support. Do ask about alternatives if you find yourself in this situation.