Internal NDIS decision documents on ME revealed!

Major takeaways is NDIS is still relying on outdated data and dodgy studies.

Below is the "evidence" assessors are using to force ME patients into harmful GET/CBT treatments... Just one problem, the "evidence" from NICE they are using no longer exist, and the draft report they do quote from NICE disproves/invalidates all the "evidence" they are relying on.

Their standards on what they expect ME/CFS patients to do are below:

"There is still little evidence to support any particular management or intervention for CFS in primary care that can provide an effective early intervention [33].

The only two evidence based therapies recommended by NICE are:ξ Cognitive Behavioural Therapy o Five to 16 sessions. Sessions ranged from 30 minutes to 150 minutes [34] o People with CFS should not undertake a physical activity or exercise programme unless it is delivered or overseen by a physiotherapist or occupational therapist who has training and expertise in CFS [32].

ξ Exercise Therapy o Duration of the exercise therapy regimen varied from 12 weeks to 26 weeks o three and five times per week, with a target duration of 5 to 15 minutes per session using different means of incrementation, often exercise at home [35] 31. Working Group of the Royal Australasian College of Physicians. Chronic fatigue syndrome."

Also this is the list of evidence the NDIS are relying on, only two are from the last 5 years and one of those were dismissed by Cochrane itself for using an out of date evidence and poor reseach methodology.

Clinical practice guidelines--2002. Med J Aust [Internet]. 2002 May 6; 176(S9):[S17-s55 pp.].

(This is a paper that even the NHMRC admits is 20 years out of date, was failed to be updated by its own researchers in 2007, and based on poor or out of date evidence and rejected by the ME/CFS community at the time )

32. National Institute for Health and Care Excellence (NICE). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. 2020. Available from: https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline

(You've got to laugh at the NDIA's incompetence here, they quote inflammatory statements from the 2007 NICE guideline yet are using the 2020 NICE draft guideline that completely invalidates their previous claims as evidence! Of course the 2021 NICE guidelines now supercede and replace any of the old recommendations)

33. Hughes JL. Chronic Fatigue Syndrome and Occupational Disruption in Primary Care: Is There a Role for Occupational Therapy? British Journal of Occupational Therapy [Internet]. 2009 2009/01/01; 72(1):[2-10 pp.]. Available from: https://doi.org/10.1177/030802260907200102

(Another study thats now 13 years out of date, NDIA used this study to validate the use of GET/CBT as doctors in the study stated "cognitive behavioural therapy and graded exercise therapy as more beneficial than medical care for CFS/ME" yet the NDIA ignored studies own results/conclusions which said "Currently, there is little research evidence to support any particular interventions for people with CFS/ME" and "57% of people with CFS/ME (in the study) reported that they had received unhelpful advice and/or treatment from their GP")

34. Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews [Internet]. 2008; (3). Available from:https://doi.org//10.1002/14651858.CD001027.pub2

(This study is now outdated and 19 years behind current research. Cochranes own comments on the study "This 2008 review predates the mandatory use of GRADE methodology to assess the strength of evidence, and the review is no longer current. It should not be used for clinical decision‐making. The author team is no longer available to maintain the review." https://www.cochrane.org/CD001027/DEPRESSN_cognitive-behaviour-therapy-chronic-fatigue-syndrome

35. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews [Internet]. 2019; (10).

Cochrane itself has now discredited and reviewed this study https://www.cochrane.org/news/cfs their most damning statement about this study here: "This amended review is still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s. Having heard different views expressed about the evidence base for this condition, we acknowledge that the publication of this amended review will not resolve all the ongoing questions about this globally important health topic.
“We have decided, therefore, that a new approach to the publication of evidence in this area is needed; and, today we are committing to the production of a full update of this Cochrane Review, beginning with a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group that we intend to convene. This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings.”)

see the full document on the Call for Change Australia Facebook page