Research Request – Central Sensitivity Syndromes and Functional Neurological Disorder
Brief
Information to assist Assessors from NAWM with their decisions for access requests relating to these specific conditions.
Date
Due 24 December 2019
Requester
Ms — Assistant Director TAT
Researcher
S47F - personal privacy
Cleared by
Contents
Scope of this document … 4 Previous AAT Cases … 4 Previous TAT advice … 4 Central sensitivity syndromes / Central regional pain syndromes – Common co-morbidities … 5 Chronic Regional Pain Syndrome (CRPS) … 9 Expert report … 9 Summary of CRPS … 10 Section 24 Disability Requirement Considerations … 10 What are the common evidence-based clinical, medical and other treatments for CRPS? … 10 When is CRPS permanent or likely to be permanent for the disability requirements? Does this condition ever improve? … 11 What type of medical treatment and review is required to determine permanency? … 12 What are the typical functional impairments associated with CRPS? … 13 Is someone with CRPS likely to require supports from the NDIS for their lifetime? … 13 Section 25 Early Intervention Considerations … 14 How do early intervention access considerations apply to people with CRPS? … 14 Chronic Fatigue Syndrome (CFS) … 15 Summary of CFS … 15 RACGP Clinical Guidelines - CFS … 16 Section 24 Disability Requirement Considerations … 17 What are the common evidence-based clinical, medical and other treatments for CFS? … 17
FOI 23/24-1127, 1128 & 1134
FOR INTERNAL TAT USE ONLY ndis:
When is CFS permanent or likely to be permanent for the disability requirements? Does this condition ever improve?
What type of medical treatment and review is required to determine permanency?
What are the typical functional impairments associated with CFS?
Is someone with CFS likely to require supports from the NDIS for their lifetime?
Section 25 Early Intervention Considerations How do early intervention access considerations apply to people with CFS?
Fibromyalgia Expert report Summary of Fibromyalgia
Section 24 Disability Requirement Considerations What are the common evidence-based clinical, medical and other treatments for Fibromyalgia?
When is Fibromyalgia permanent or likely to be permanent for the disability requirements? Does this condition ever improve?
What type of medical treatment and review is required to determine permanency?
What are the typical functional impairments associated with Fibromyalgia?
Is someone with Fibromyalgia likely to require supports from the NDIS for their lifetime?
Section 25 Early Intervention Considerations How do early intervention access considerations apply to people with Fibromyalgia?
Functional Neurological Disorder (FND) aka Conversion Disorder Summary of FND
Section 24 Disability Requirement Considerations What are the common evidence-based clinical, medical and other treatments for FND?
When is FND permanent or likely to be permanent for the disability requirements? Does this condition ever improve?
What type of medical treatment and review is required to determine permanency?
What are the typical functional impairments associated with FND?
Is someone with FND likely to require supports from the NDIS for their lifetime?
Section 25 Early Intervention Considerations How do early intervention access considerations apply to people with FND?
Next steps Reference List Appendix A — AAT Case Summary Appendix B — Previous TAT advice Appendix C - Report on Complex Regional Pain Syndrome Appendix D - Report on Chronic Fatigue Syndrome Appendix E - Report on Fibromyalgia Research Request – Central Sensitivity Syndromes and Functional Neurological Disorder Page 2 of 45 Page 2 of 26
Please note:
The research and literature reviews collated by our TAT Research Team are not to be shared external to the Branch. These are for internal TAT use only and are intended to assist our advisors with their reasonable and necessary decision making.
Delegates have access to a wide variety of comprehensive guidance material. If Delegates require further information on access or planning matters they are to call the TAPS line for advice.
There are already a significant number of resources, including commissioned expert reports and external specialist publications and clinical guidelines, which are available to NDIA staff to use in delegate decision making.
This paper aims to bring these resources together as a starting point and provide any additional information as required.
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Scope of this document
The National Access and Workload Management Branch (NAWM) have requested assistance from TAT with assessing access for prospective participants with Chronic Regional Pain Syndrome, Functional Neurological Disorder aka Conversion Disorder, Chronic Fatigue Syndrome & Fibromyalgia.
Note: While the Disability Related Health Supports (DRHS) policy has not changed any of the established NDIS access criteria or legislation, the fact that 1) Participants can now receive DRHS through the NDIS and 2) A planner must now plan for the ‘whole of person’, means that the ‘most appropriate funder/provider’ proviso (under s34.1.f) no longer eliminates the typical types of supports that the NDIS could potentially fund for this cohort.
This is causing an increase in access requests being made for these health conditions, based on their diagnosis and lived/reported significant functional impairment(s)
The symptoms and experiences of people with these health conditions are individual and often complex, consequently it is often challenging for medical experts to determine a diagnoses.
Even once a diagnosis has been made, it remains difficult for NDIS access assessors to apply the Access - disability requirements criteria, particularly to determine permanency and the need for NDIS supports for life, compared to mainstream health treatment and supports.
Also, as the pathophysiology [the disordered physiological processes associated with disease or injury] of these conditions are still poorly understood, it is challenging for access assessors to determine whether these cohorts have exhausted all evidence-based, clinical, medical or other treatments.
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None of these conditions are included on the List A, B, C or D for common conditions that meet NDIS Access – disability requirements.
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While the outcomes of AAT hearings are not intended to set a precedent, the NDIA legal team’s application of the access legislation against these health conditions in AAT cases is the only direction the NAWM have to guide their decision making.
Previous AAT Cases
The majority of these AAT cases were relating to access and were deemed ‘access not met’. Generally, it was only in severe cases that access was met, where permanency and functional impairment were established through expert reports.
See APPENDIX A for full summary of AAT cases relating to these conditions to date.
Previous TAT advices
There are several previous TAT access advices relating to these health conditions. Most of these advices are from 2017 & 2018.
These TAT advices highlight that CRPS, CFS, FND, fibromyalgia, along with Postural tachycardia syndrome (PoTS), depression, anxiety and other psychosocial disability, Lyme’s disease & lupus often present as complex comorbidities.
See APPENDIX B for full summary of TAT advices relating to these conditions.
Chronic Fatigue Syndrome (CFS)
Expert report
In January 2018 the Technical Advisory Team commissioned a report on Chronic Fatigue Syndrome from an Australian expert in the field — Dr Andrew Lloyd, MD FRACP. The report was intended to assist with specific TAT AAT Chronic Fatigue access cases, but offers a holistic snapshot of the condition.
This report has all the information a NAWM team member would require to assess access and provides answers to the following questions:
Preamble
- What is the aetiology of this condition?
- What is the impairment, if any?
- What medical and allied health specialties are involved in: a) Diagnosis and b) Treatment of this condition?
- What treatment options are clinically indicated for this condition? What are the indications and likelihood of success for each treatment? Please comment on details and dosage of any recommended treatments including frequency and duration as appropriate.
- Is this condition results from an impairment, what is the likelihood that this impairment will be permanent?
- Are individuals suffering this condition likely to require lifelong support? If so, what types of supports are likely to be required?
- Would symptom management through interventions such as medication change, pain management, exercise programs etc. reduce the functional impact of the diagnosis and associated disability?
- How prevalent is the incidence of Chronic Fatigue Syndrome being diagnosed as a stand-alone condition as opposed to being diagnosed as part of comorbidity?
- Other comments:
This full report is embedded in APPENDIX D for reference.
Information additional to the expert report are listed below.
Summary of CFS
CFS is often referred to as myalgic encephalomyelitis and sometimes it is abbreviated as ME/CFS.
In addition to fatigue for more than 6 months that is not relieved by sleep and interferes with activities of daily life, patients suffer other symptoms such as cognitive impairment, muscle and joint pains and sore throat.
Diagnostic criteria for chronic fatigue syndrome:
- Unexplained, persistent fatigue that is not due to ongoing exertion; is not substantially relieved by rest; is of new onset (not lifelong); and results in a significant reduction in previous levels of activity.
- Four or more of the following symptoms are present for 6 months or more:
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RACGP Clinical Guidelines - CFS
In 2002, a Chronic Fatigue Syndrome Working Group, which convened under the auspices of the Royal Australasian College of Physicians (RACGP) published a comprehensive article Clinical Practice Guidelines on CFS. The publication was sponsored by the Commonwealth Department of Health and Ageing and was published in the Medical Journal of Australia. The article is comprehensive (40 pages) and addresses the following topics:
- What is chronic fatigue syndrome?
- Evaluating people with fatigue
- Managing patients with CFS
- CFS in children and adolescents
- Social and legal issues
The NDIA acknowledges that there is conflicting evidence regarding the permanency and best management of ME/CFS.
Currently, the NDIA continue to use these RACGP Chronic Fatigue Syndrome Clinical Practice guidelines on diagnosis and management, as these are the accepted national guidelines.
It is understood that these guidelines are in the process of being updated but until this occurs, the current guidelines continue to be the accepted document of reference for the NDIA. It should be noted that NDIA does not have input into the guidelines as they are related to health practice.
It is recommended that all TAT advisors refer to this document in full.
The RACGP clinical guidelines state that:
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“Fatigue can be defined as a pervasive sense of tiredness or lack of energy that is not related exclusively to exertion. It is a common complaint in the community and is usually transitory. If fatigue is prolonged beyond six months, is disabling, and is accompanied by other characteristic constitutional and neuropsychiatric symptoms, then a diagnosis of chronic fatigue syndrome (CFS) should be considered”.
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“CFS” is a descriptive term used to define a recognisable pattern of symptoms that cannot be attributed to any alternative condition. The symptoms are currently believed to be the result of disturbed brain function, but the underlying pathophysiology is not known. Therefore, CFS
16 Kreijkamp-Kaspers, S, et al., ’Treating Chronic Fatigue Syndrome: A study into the scientific evidence for pharmacological treatments, Australian Family Physician, vol.40, no.11, November 2011, https://www.racgp.org.au/download/documents/AFP/2011/November/201111kkaspers.pdf, accessed 10 December 2019.
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Section 24 Disability Requirement Considerations
What are the common evidence based clinical, medical and other treatments for CFS?
- See 5.4 of the NDIS (Becoming a Participant) Rules 2013. The RACGP clinical guidelines state that:
- “No single pharmacological treatment has been shown to be effective for people with CFS.”
- Cognitive—behaviour therapy may be effective for some people with CFS.
- Physical and intellectual activities should be “paced” according to the individual’s functional capacity.
- Graded exercise may be effective for some people with CFS.
- Antidepressant drugs may provide symptomatic relief of pain, sleep disturbance, and depressed mood in people with CFS.”
See page 38-42 of clinical guidelines for more information. The clinical guidelines emphasise a multidisciplinary approach.
- “People who are persistently housebound with severe disability arising from CFS may require the assessment and advice of a team, including specialists in rehabilitation medicine, pain management, physiotherapy, occupational therapy, and social work.”
A wide variety of pharmacological treatments are used for chronic fatigue syndrome, however the evidence for effectiveness is very limited. A 2011 study published In the Australian Family Physician
17 Chronic Fatigue Syndrome Clinical practice Guidelines, Royal Australasian College of Physicians, Medical Journal Australia, vol.176, May 2002, p.23, https://www.mja.com.au/system/files/issues/cfs2_2.pdf, accessed 6 December 2019.
18 Ibid. p.38. 19 Ibid, p.37.
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When is CFS permanent or likely to be permanent for the disability requirements? Does this condition ever improve?
- See S24.1(b) of the NDIS Act 2013 & 5.3 of the NDIS (Becoming a Participant) Rules 2013.
Diagnosis is established through the exclusion of other diseases causing fatigue… Currently, no curative treatment exists for patients with chronic fatigue syndrome. The therapeutic approach to this syndrome requires a combination of different therapeutic modalities.
Regarding prognosis, the same publication states that:
- “There is an average time of 5 years from the beginning of the symptoms to the diagnosis of the syndrome, with total recovery rates between 0% and 37%, and improvement between 6% and 63%. Younger patients and those without concomitant psychiatric diseases show the best prognosis, although other studies have estimated that the rates for both groups are similar.”
Regarding prognosis and permanency, the overview from 2015 (mentioned above) provides the following statistics:
20 Kreijkamp-Kaspers, loc cit.
21 Cleare, AJ, et al., Chronic fatigue syndrome’, BMJ Clinical Evidence, September 2015, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4585442/, accessed 10 December 2019.
22 Ibid.
23 Brigden, A et al., ‘Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood’, May 2018, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5947766/, accessed 12 December 2019.
24 Fernandez, AA, et al., ‘Chronic fatigue syndrome: aetiology, diagnosis and treatment’, BMC Psychiatry, vol. 9, October 2009, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2766938/, accessed 6 November 2019.
25 Ibid.
Studies have focused on people attending specialist clinics.
A systematic review of studies of prognosis (search date 1996) found that children with CFS had better outcomes than adults: 54% to 94% of children showed definite improvement in symptoms (after up to 6 years’ follow-up), whereas 20% to 50% of adults showed some improvement in the medium term (12-39 months) and only 6% returned to premorbid levels of functioning.
Nevertheless, one prospective follow-up study suggests that, even after long illness periods, around 50% of patients can return to part- or full-time work. Despite the considerable burden of morbidity associated with CFS, we found no evidence of increased mortality. The systematic review found that a longer duration of illness, fatigue severity, comorbid depression and anxiety, and a physical attribution for CFS are factors associated with a poorer prognosis. Another review found a median full recovery rate of 5% (range 0-31%), and the median proportion of patients who improved during follow-up to be 39.5% (range 8-63%). Good outcome was associated with less fatigue severity at baseline, a sense of control over symptoms, and not attributing the illness to a physical cause.
The available research on ME/CFS indicates that, due to the natural progression of the condition, some individuals may recover without intervention over weeks to months. It cannot be considered that every person diagnosed with ME/CFS will go on to have a permanent and lifelong impairment.
Regarding children, a UK based review from 2017 found that:
Reported outcomes vary, but the prognosis in children and young people is more optimistic than in adults. Four small studies (n=15—31) from the 1990s report that between 50% and 94% of children make a good or complete recovery at 13-72 months. The largest trial to date demonstrated that most children with CFS/ME will recover within 6 to 12 months if they receive internet-delivered CBT as treatment. For those who do not receive specialist care, recovery is much slower with less than 10% recovering at 6 months.
What type of medical treatment and review is required to determine permanency?
Relating to 5.6 of the NDIS (Becoming a Participant) Rules 2013. The expert report from Dr Lloyd states that:
Given that there is no evidence for any curative intervention (as above), the key issue regarding permanence of impairment due to chronic fatigue syndrome relates to the natural history of the condition. When followed prospectively from acute infections such as glandular fever, the great majority of individuals recover without intervention over weeks to months, but approximately 10% will meet diagnostic criteria for chronic fatigue syndrome at six months. When the chronic fatigue syndrome has been present in a stable, non-improving pattern, despite evidence-based management (as above) for 5 years, the Australian expert guidelines indicate that the condition should be regarded as permanent for medico-legal purposes. In this context, the only additional consideration relates to the severity of the impairment. As described above, chronic fatigue syndrome is an entirely subjective illness (that is there are no abnormal findings on history, examination or laboratory investigation), yet it is clear that the level of disability associated with chronic fatigue syndrome is
26 Cleare, loc cit.
27 A. Brigden et al.,
What are the typical functional impairments associated with CFS?
The common functional impairments associated with CFS generally fall under the mobility, self-care, self-management and social interaction categories. The expert report by Dr Lloyd highlights impairments to physical and cognitive functioning.
Is someone with CFS likely to require supports from the NDIS for their lifetime?
The key types of support the expert report highlight are assistance with daily living:
- “Patients typically require practical support to maintain independent living (assistance with shopping, cooking, cleaning) and travel (to/from medical appointments). This would rarely include the need for assistance with personal hygiene”.
Section 25 Early Intervention Considerations
How do early intervention access considerations apply to people with CFS?
Early intervention considerations do not apply to CFS. Any services that a person with CFS would receive before the condition is considered permanent would be considered time-limited health treatments.
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Reference List
s22(1)(a)(ii) - irrelevant material
The Royal Australian College of Physicians, “Chronic fatigue syndrome: Clinical practice guidelines — 2002”, MJA, Vol 176, 2002, https://www.mja.com.au/system/files/issues/cfs2_2.pdf
s22(1)(a)(ii) - irrelevant material
A. Brigden et al., “Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood”, Arch Dis Child. , Vol. 102, No 10, pp. 981-986, 2017, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5947766/
s22(1)(a)(ii) - irrelevant material
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Appendix D - Report on Chronic Fatigue Syndrome
Double click on report front page to open the full PDF report.
Andrew Lloyd AM MD FRACP Professor of Medicine Consultant Infectious Diseases Physician Provider No: 021760SY All Correspondence to Private Consulting Rooms: 32 Botany St, Randwick, NSW, 2031 Appointments: Tel: (02)93858319 Fax: (02) 9385 8268 Email: lloydconsultingrooms@unsw.edu.au Department of Infectious Diseases Prince of Wales Hospital and Kirby Institute University of NSW, 2052
Report in response to a request for information and advice regarding chronic fatigue syndrome.
Preamble: The request (31.1.2018) sought information and advice regarding chronic fatigue syndrome, however it should be noted firstly that this diagnosis is syndromal - that is it is a syndrome recognized via a characteristic set of symptoms and careful exclusion of alternative medical and psychiatric explanations for those symptoms (individually or as a whole) via medical and psychiatric history, physical examination and laboratory investigation). This sort of assessment contrasts with diagnoses made on the basis of a test, such as pneumonia recognized by chest Xray. Secondly, as a consequence of this syndromal diagnosis the label of chronic fatigue syndrome is recognized to overlap with other syndromal diagnoses, suchas fibromyalgia (in which pain rather than fatigue is the dominant feature).? In practice, this means that individual patients may be given both diagnoses in relation to the same set of symptoms. Thirdly, a diagnosis of chronic fatigue syndrome may be replaced in some circumstances with an alternative label (for the same condition) when the prolonged illness follows from a well-characterised initiating event. This includes post viral fatigue syndrome or post-infective fatigue syndrome when the triggering event was an acute infection (such as glandular fever). The label chronic fatigue syndrome is referred to in the UK as myalgic encephalomyelitis (ME). The symptom set and diagnostic approach for chronic fatigue syndrome is closely analogous to the diagnosis of post cancer fatigue, which is applied when survivors of cancer have completed surgery and adjunctive treatments such as Chemotherapy and radiotherapy, are free of cancer recurrence, but have a disabling chronic fatigue state*. Finally, there are various diagnostic criteria that have been proposed for the chronic fatigue syndrome, placing emphasis on slightly different elements of the illness, but the most widely accepted and recommended criteria?, are those usually termed the ‘international diagnostic criteria’ which were formulated by an international expert group convened by the Centers for Disease Control in the USA*.
What is the aetiology of this condition? Chronic fatigue syndrome is a condition characterised by prolonged (greater than 6 months), unexplained and disabling fatigue, which is accompanied by neurocognitive difficulties, like impairments in short-term memory and concentration, as well as the complaint of unrefreshing sleep. In addition, constitutional symptoms are typical including muscle pain (myalgia), joint pain (arthralgia), recurrent sore throat, headache, and tender lymph nodes in the neck (ie cervical lymph nodes)*. The fatigue state is characterised by a sustained worsening of symptoms after
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