The Good:
"The Agency accepts that the 2021 NICE Guidelines now replace the previous 2007 NICE guidelines."
 
"The NDIA is moving to a new ICT system and will update to ICD-11 in this new system during 2022-2023."
 
The Bad
-The Agency has no intention to add any new conditions to list B of permanent conditions. Yet they contradict themselves later by saying "The use of automatic lists does not fully align with the access requirements of the act and rules"

-By the time NDIA update their ICD codes (approx two years) new ICD codes will have already likely been created.
 
-"The Agency is also aware of the statement from a number of senior medical groups in response to the 2021 NICE guidelines including:
 
royal college of physicians
royal college of physicians Edinburgh
royal college of general practitioners
royal college of psychiatrists
academy of medical royal colleges
faculty of sport and exercise medicine
faculty of occupational medicine

(Their disgusting response which the NDIA are referring to is is here https://www.rcplondon.ac.uk/.../medical-leaders-sign
 
Re: credibility of the royal colleges these articles explain why their opinion is BS is here
https://thesciencebit.net/.../nicexit-royal-colleges.../

https://thesciencebit.net/.../self-styled-medical.../

So why on earth are the NDIA ignoring an independent government regulator and instead choosing to still rely on what is essentially (by Australian standards) Industry lobbyists? Lobbyists that hold extreme bias, vindictive & vested interests and actively tried to undermine the integrity of NICE's independent review processes?

These are groups that presented "evidence" to NICE which NICE itself came to the conclusion was of "poor to very poor quality" the fact that the NDIA would even consider these views are extremely concerning.
 
-In response to the NDIA using two guidelines that are now in direct conflict with each other (the 2002 outdated Australian guidelines and the and 2021 NICE guidelines) the agencies response is below
 
"NDIA response: As above, treatment guidelines are used to determine whether ‘the person’ applying for access to the Scheme has been fully treated prior to any impairment that meets the criteria listed in s24.1(a) or s25.1(b) being assessed as permanent. All treatment recommendations from any relevant guidelines are considered.
The Agency has no position on the difference in the 2007 and 2021 Guidelines nor whether their recommendations are conflicting. In the absence of any further evidence-based guidance clarifying treatment recommendations for ME/CFS, they will be collectively used together with other expert opinion to assess whether any person applying for access to the Scheme with ME/CFS has explored and/or trialled all the treatment options they recommend."

So no word on who these experts are,
unfortunately this isn't good news for us as the agency is still choosing to continue to use BOTH NICE guidelines from 2007 and 2021 even though the new 2021 NICE guidelines OFFICIALLYreplaces the old 2007 ones. If NDIA continues to choose to use the old 2007 NICE guidelines they legally cannot have NICE's backing or endorsement, and for all intents and purposes the 2007 guidelines legally no longer exist.

-No response on the outdated and expired 2002 Australian guidelines. Even though the new and current 2021 NICE guidelines discredit GET/CBT and the old outdated and expired 2002 australian guidelines still strongly advocates for their use. These documents clearly contradict other other yet the NDIA are happy to cherry pick which "evidence" suits them better to either deny or give access to ME patients trying to enter the scheme

The NDIA also stated: "As above, despite this reported conflict, in the absence of any further evidence-based guidance clarifying treatment recommendations, the Agency will use all available guidance, relevant to the particular individual case, to consider whether a person applying for access to the Scheme has fully explored and/or trialled all recommended interventions for ME/CFS. This is a consistent approach used for all access decisions not just ME/CFS."

Yet NDIA have clearly ignored these current updated guidelinesfrom the Mayo Clinic, the USA, CDC, the UK and Europe all Published recently that all discredits GET and CBT

US ME/CFS Clinician Coalition: https://y9ukb3xpraw1vtswp2e7ia6u-wpengine.netdna-ssl.com/

Mayo Clinic: https://www.mayoclinicproceedings.org/.../S0025.../fulltext

European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): https://www.mdpi.com/1648-9144/57/5/510/htm

CDC guidelines on ME/CFS
https://www.cdc.gov/me-cfs/treatment/index.html

So why are the NDIA so attached to guidelines that are expired, out of date or now non existent? (i.e. the 2002 Australian guidelines and 2007 nice guidelines?) who are they looking out for? It certainly isn't ME and CFS patients..

-Again we sought to get a response on who the NDIA are getting this faulty and dangerous advice from and yet again the agency have avoided to fully answer the question
 
The NDIA response was: "The Agency receives approaches from several peak bodies. For ME/CFS this has been predominantly Emerge and to a lesser extent ME/CFS Australia. The Agency consistently engages with a range of Peak Bodies."
"There was no tender process involved in the above process. The Agency communicates and engages with all Peak bodies that seek to connect with us. The NDIA accesses information as needed from a range of various sources."

So no idea who these other 5 "peak bodies" or their representatives are, or if any public oversight from the ME/CFS community was made to make sure that any harmful GET/CBT advocates/practitioners or lobbyists were excluded.
 
But I know one thing for sure and I will bet my life that neither Emerge Australia Inc, or ME/CFS Australia were responsible for delivering this negligent advice to the NDIA. I believe the NDIA are being disingenuous by only naming these two orgs rather than the party/parties actually responsible and I'm more than 100% sure It's more than likely that a GET/CBT practitioner with a highly vested interest in keeping the status quo is the one giving them this advice.
 
-On the ICD codes the agencies response was this: "ME/CFS has been recorded in the system since 1 July 2020. (when we made our first FOI request) The ICD-10 code is R53.8 (Chronic fatigue/ME)." which is listed under "other malaise and fatigue"
Yet Myalgic Encephalomyelitis (ME) on the ICD - 10 code is listed under G93.3 under other disorders of the nervous system. So yet again the NDIA are cherry picking the terms and data they want to use to help or deny access to patients.