October 25, 2017
Joint Standing Committee of NDIS Members
Submission
Subject : NDIS Policies and Procedures
Setting : Chronic Fatigue Syndrome (or Myalgic Encephalomyelitis)
To all it may concern,
It is unclear to me if Members of the Senate Committee regarding the finalisation of policies and procedures of the NDIS pertaining to Chronic Fatigue Syndrome (CFS) …
… have before them accurate information regarding the nature, course and long term health and welfare of individuals with Chronic Fatigue Syndrome.
Indeed, I have before me, information that speaks for the veracity of my concerns, which I will now present.
I have been given information (with permission from the NDIS applicant, a Ms SW) regarding what could be construed as current ‘Policies and Procedures’ by the NDIS as to how individuals with a diagnosis of CFS are currently managed by the NDIS.
(PLEASE NOTE: The applicant is not my patient, and I have no intentions of representing this applicant’s application for NDIS services, which were denied initially on July 19, 2017 and again on October 25, 2017 on the basis of inadequate and ‘poorly informed’ analyses of existing understandings).
On October 2017, a representative of the NDIS pointed to the Better Health Channel Victoria State Government website * so as to make a number of statements that are not consistent with my 30 year longitudinal experience ** with patients with Chronic Fatigue Syndrome in order to deny Ms SW’s claim for assistance from the NDIS.
The statements made are, in my view, erroneous and the NDIS senior representative reached the following conclusions, none of which are precisely referenced on the website in question.
My experience with CFS is completely at odds with the officially made statements to an NDIS applicant in an email to her sent on October 25, 2017 by a senior legal representative of the NDIS, which are as follows :
(a) On average, many people with Myalgic encephalomyelitis (ME) / CFS will improve in the first five years, but others may mainly stay at home or in bed or may suffer relapses throughout their lives; and
(b) People who receive an early diagnosis and early treatment tend to do better.
(* https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome cfs
This website is not authored, dated, nor shows evidence of professional peer review. If indeed there are no extant official Policies and Procedures held by the NDIS, then the NDIS is vicariously using a website of no official standing, as their Position Statement in the letter to Ms SW regarding all matters that envelop the knowledge base of the NDIS, shows it is reliant solely on External Resources, an approach that many would deem unprofessional and unbecoming of a Government sponsored body such as the NDIS).
(** in my capacity as a consultant physician in Internal Medicine and Infectious Diseases with a special highly focused interest in CFS throughout, since 1987).
Efforts to obtain Policies and Procedures information directly from the NDIS by associates of mine have, to date, not been successful, so it does seem that one possible explanation for this difficulty is that there are no official NDIS Policies and Procedures regarding CFS, a serious and disabling condition that warrants appropriate consideration as per the Government’s expectations to look after such disabilities appropriately and humanely, and with self held policies and procedures in place.
The potential loss of such care by many of my own patients as a result of NDIS’s apparent inadequacies demonstrated above, is a serious concern to me.
I do see an increase in suicide rate amongst CFS patients of all ages, young and old, who are alone and in serious hardship already, as a real possibility as a DIRECT RESULT of the full rollout of the NDIS’s approach to CFS in 2018.
The above NDIS statements (a) and (b) are very unusual positions to take (given what experts on the matter know and believe), and are expressed by a non-medical person who presumably contorted the reference information on the Better Health Channel website to create statements that are not even close to what is seen in clinical settings in patients here in Australia.
There are no longitudinal studies of value on validly diagnosed cases of CFS to support the above contentions. I have many patients who I have a longitudinal relationship of 20-25 years standing. There are very few doctors anywhere in the world who can claim similar experiences.
The functional ‘improvements’ referred to are not as simple as the NDIS representative claims. These patients illnesses are life long, and improvements are transitory, if and when they do occur. The PACE study claimed improvements, and held sway in the UK for some time, and formed the basis for former claims in the NICE Guidelines and Cochrane Report, both of which are referenced on the Better Health Channel website. In 2016-2017, the biopsychosocial (BPS) model of CFS was largely discredited and cannot be relied upon as being the basis of Best Treatments and Outcomes.
Thus, the NDIS position, if it does indeed hold any official position at all on CFS, is an untenable one, and old, disproven data should not be used to formulate a position currently held, as of October 25, 2017, and which suggests the direction that the NDIS is likely to take as finalised as of January 2018.
It is NOT my experience at all, that on average, that patients with ME / CFS will improve in the first five years, and I hereby request sound data to disprove my experience, which I suggest to the committee, does not exist.
It is my experience that if patients are initially bedbound, they may improve in the first 6 months or so, but beyond this early timeframe, no improvements can be expected to occur in the natural course of the illness, especially after the 2 year mark. Those who do improve will show improvements during this timeframe, and one can predict from the lack of significant improvements at the 6 month mark that patients are likely to remain significantly incapacitated or disabled from this point onwards. In other words, prognosis can be reliably predicted at 6 months and confirmed as certain at 2 years from the time of acute onset of illness. Those with illness of gradual onset are even more likely to remain disabled permanently.
Thus, it is my strong position that statement (a) above is incorrect and is not to be used or referenced or applied to ME / CFS patients by the NDIS as a finalised position of any kind. It is the onus of the Australian Government to perform its own research into ME / CFS in Australia, as overseas data is coloured by local politics, national attitudes and perspectives that can bias the formulation of policies differently in each country. Australia should rely on its own findings.
I am even more critical of statement (b) above. ME / CFS is a biological entity, and research here in Australia strongly supports a genetic predisposition * affecting multiple key metabolic and immunological factors are at play, amongst many other complex entities. Thus, post infectious ME / CFS will run a natural course determined by biological factors independent of the diagnostic and interventional process. Aggravating stressors should be addressed, but there is little or no skill or training in the Australian Medical Workforce to address these issues appropriately and widely, and available in a meaningful and cost effective manner for all Australian and in all States.
( * See https://www.melbournebioanalytics.org/symptommetabolome-directed genomics-for-mecfs-by-neil-mcgregor-written-transcription/ )
The NDIS case of Ms SW (NDIS ref: 430058059) a decision was made by the NDIS on July 19, 2017, which included:
This statement has no foundation in reality. This has never occurred in any of my 5,000 patients seen over 30 years. Once a sound diagnosis has been made, using appropriate criteria (not the Oxford Criteria, for example), permanency is guaranteed once the 2 year mark post illness onset has been reached. Permanency can be predicted earlier than this in many patients. This is because the term CFS is a misnomer, and encompasses many symptoms, disabilities (many of which can be confirmed if appropriate technologies are used and accurately interpreted) and discomforts other than fatigue.
The film Unrest, which can now be downloaded from Amazon.com and from iTunes, clearly demonstrates the fallacy of the term CFS and the many other clinical challenges that adversely impact on a sufferer with ‘CFS’.
Adequate definitions of recovery do not exist, and as longitudinal studies of large numbers of patients have never been performed, I can only rely on my own large, longitudinal experience to refute the above NDIS Claim. There is no conflict (as claimed above), unless one creates one for financial purposes, or for other nefarious reasons.
In summary (there is inadequate opportunity to cover all aspects of the NDIS ‘s lack of unreliable position, as gleaned from the two documents of correspondence pertaining to Ms SW), the NDIS is ill prepared and not familiar with current developments and understandings of ME / CFS.
The Senate enquiries into the State of Affairs of CFS in Australia, led by the former Senator Scott Ludlam, clearly indicate the paucity of motivation of The Department of Health to make research into CFS in Australia a priority, and hence, the NDIS cannot hold a reliable position on the matter either.
If the NDIS is empowered to act in a reckless manner towards patients with genuine impairments such as those seen in ME / CFS, this sets a very poor example and precedent, especially to new generations of Australians dependent on the the internet for guidance in regards to how the needy should be respected as equals in the eyes of the law and as Australian citizens.
Yours sincerely,