Chronic Regional Pain Syndrome (CRPS)

Expert report

In June 2018 the Technical Advisory Team commissioned a report on CRPS from three experts in the field — Dr === (Physio), Dr S47 spersonaliprivacy (psych) & Dr #7FsP=miP¥ay (pain management specialist). The report was intended to assist with specific TAT AAT CRPS 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:

1. What is the aetiology of this condition? a. Terminology: b. Diagnosis c. Clinical Presentation
2. What is the impairment, if any?
3. What medical and allied health specialties are involved in: a. Diagnosis: b. Treatment of this condition:
4. 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. a. Physical therapies b. Psychological therapies c. Medications d. Interventional therapies e. Implanted therapies
5. Is this condition results from an impairment, what is the likelihood that this impairment will be permanent?
6. Are individuals suffering this condition likely to require lifelong support? If so, what types of supports are likely to be required?
7. Would symptom management through interventions such as medication change, pain management, exercise programs etc. reduce the functional impact of the diagnosis and associated disability?
8. How prevalent is the incidence of CRPS being diagnoses as a stand-alone condition as opposed to being diagnosed as part of comorbidity?

This full report is embedded in APPENDIX C for reference.

Information additional to the expert report are listed below.

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Summary of CRPS

Greta Palmer - Pain specialist and anaesthetist at the Royal Children’s Hospital and Royal Melbourne Hospital provides the following information on CFS via the NPS MedicineWise website:

• CRPS is an uncommon chronic pain condition.
• The syndrome occurs spontaneously or is triggered by injury, such as a strain or sprain, a distal fracture or surgery. The upper limb is affected more in adults and the lower limb in children. Usually, the pain is out of proportion to any preceding injury.
• In CRPS type I there is no evidence of nerve damage. This was formerly called reflex sympathetic dystrophy or Sudeck’s atrophy.
• In complex regional pain syndrome type II there is a history of nerve injury. This was formerly called causalgia.
• CRPS is a painful debilitating condition in a limb. It is associated with abnormalities in skin, bone, and the autonomic, sensory and motor nerves.
• The features are limb pain, allodynia, hypersensitivity, hyperalgesia, abnormalities of the vasomotor, sudomotor and motor systems, and trophic changes, with reduced use of the affected limb. The diagnosis is clinical and one of exclusion.
• The emphasis of therapy is graded rehabilitation and movement of the limb with physiotherapy and occupational therapy. Psychological therapies should be offered if a patient is making no or slow progress in the acute phase, and to all patients in the chronic phase as depression can occur.
• The goal of pharmacotherapy is to assist functional improvement. The early phase may be managed with simple analgesia. Antineuropathic drugs including tricyclic antidepressants and antiepileptic drugs may be added. Other treatments with some evidence of effectiveness include corticosteroids, calcitonin and bisphosphonates.

See full complex regional pain syndrome fact sheet written by Greta Palmer - Pain specialist and anaesthetist Royal Children’s Hospital and Royal Melbourne Hospital.

Better Health Channel – Victoria have also published a Complex regional pain syndrome (CRPS) fact sheet which was written by professionals at the Austin health – Pain Management service.

Section 24 Disability Requirement Considerations

What are the common evidence based clinical, medical and other treatments for CRPS?

• See 5.4 of the NDIS (Becoming a Participant) Rules 2013.

A management update on neuropathic pain, which was published in the Australian Family Physician in 2013 states the following regarding current evidence based recommended treatments for neuropathic pain:

10 Palmer, G, ‘Complex regional pain syndrome’, June 2015, NPS MedicineWise, https://www.nps.org.au/australian-prescriber/articles/complex-regional-pain-syndrome, accessed 26 November 2019.

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With only a few evidence-based clinical trials for treating CRPS, treatments are extrapolated from studies of other neuropathic conditions.

• An older, randomised double-blinded, placebo-controlled trial showed limited improvement with gabapentin.
• Less rigorous trials and case studies have shown some benefit using non-steroidal anti-inflammatory drugs (NSAIDs), opioids, baclofen, calcitonin, corticosteroids, bisphosphonates, dimethyl sulfoxide, IV immunoglobulin therapy and TCAs, while intravenous lignocaine temporarily reduces spontaneous evoked pain.
• Some benefit has been reported using anti-TNF antibodies (infliximab).

Treatment options for complex CRPS are outlined in Table 4 (below).

There is little evidence for invasive procedures, particularly in the early treatment of CRPS. Sympathectomy does not provide lasting analgesia and may worsen the pain. Spinal cord stimulation produces short-term improvement in refractory cases and could be considered in combination with behavioural and physical therapies.

Current treatment of CRPS is directed toward restoration of function using pharmacological, psychological and physical therapies. In practice, first line pharmaceutical agents to consider are opioids, antidepressants, gabapentinoids, carbamazepine and corticosteroids.

Some evidence	No evidence (worth considering)
Bisphosphonates	NSAIDs
Gabapentin	Opioids
Corticosteroids	TCAs
Topical 50% dimethyl sulfoxide	SNRIs
Anti-TNF antibodies (infliximab)	Sodium channel blockers
IV immunoglobulin therapy

When is CRPS 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.

Regarding permanency, the MayoClinic provide the following information highlighting that improvement or permanency is entirely dependent on the individual patient’s circumstances:

• Symptoms may change over time and vary from person to person. Pain, swelling, redness, noticeable changes in temperature and hypersensitivity (particularly to cold and touch) usually occur first.
• Over time, the affected limb can become cold and pale. It may undergo skin and nail changes as well as muscle spasms and tightening. Once these changes occur, the condition is often irreversible.

11 Votrubec, M & Thong, I, ‘Neuropathic pain: A management update’, Australian Family Physician Vol. 42, no. 1/2, January/February 2013, https://www.racgp.org.au/download/Documents/AFP/2013/March/201303votrubec.pdf, accessed 29 November 2019.

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Complex Regional Pain Syndrome (CRPS)

Complex regional pain syndrome occasionally may spread from its source to elsewhere in your body, such as the opposite limb.

In some people, signs and symptoms of complex regional pain syndrome go away on their own. In others, signs and symptoms may persist for months to years. Treatment is likely to be most effective when started early in the course of the illness”12.

The CRPS Network Australia provide advice to people with CRPS and:

• “It is important to keep a positive attitude. Remission is possible and attainable.
• It may take 12 —18 months to stabilise your CRPS and for many people, who are diagnosed within 3-6 months of the inciting event, their symptoms are completely resolved within this time frame”13.

The expert report by S47F - personal privacy) (Appendix C) highlights that “there is enormous variation in the prognosis of CRPS. Many people recover in the first six to twelve months. After this time there is a diminishing chance of recovery. Once there are significant signs of joint fibrosis (stiffening of joints) or muscle dystonia it is the authors’ experience that it appears to be unlikely that there will be significant improvement. Again it is the authors’ experience that in these severe cases, the clinical pathway is then further deterioration over another one to two years with stabilisation occurring by the end of year two or three. At this time it would appear that any impairments will be permanent”.

What type of medical treatment and review is required to determine permanency?

• See 5.6 of the NDIS (Becoming a Participant) Rules 2013. Diagnosis of complex regional pain syndrome is based on the Budapest Diagnostic criteria. CRPS Network Australia provide an example of a Budapest Criteria here.

An issue with the Budapest CRPS test is that it is based on excluding other diagnoses, that is, the final diagnostic criteria is to confirm that ‘there is no other diagnosis that better fits’.

The 2013 management update on neuropathic pain states the following regarding diagnosis and clinical presentation for CRPS:

“Complex regional pain syndrome (CRPS) is rarely seen in general practice. Diagnosis is based on a cluster of clinical criteria affecting the somatosensory and autonomic nervous systems. However, CRPS remains a classification enigma: both neuropathic and other non-neuropathic pathophysiological processes have been suggested. Early recognition in primary care, implementation of treatment and referral to a pain service will help minimise function loss, chronicity and disability.

A patient with CRPS typically presents with severe pain on movement, with skin colour and temperature changes, and sweating and swelling that occurs in a regional distribution. Reduced movement, weakness and tremor may also occur. Clinical signs include vasomotor and sudomotor (relating to sweat glands) changes, motor signs, pain, allodynia, hyperalgesia

What are the typical functional impairments associated with CRPS?

The expert report from s47F - personal privacy lists that CRPS may result in loss of or damage to the following functions:

• Mental functions e.g. energy and drive functions, sleep, attention, memory, emotional functions, perceptual functions, higher level cognitive functions
• Sensory functions e.g. pain, light touch, temperature
• Neuromuscular and movement related functions e.g. mobility of joint, muscle power an tone, involuntary movements, balance and coordination
• Functions of skin and related structures e.g. skin temperature, sweating, nail and hair growth.

Is someone with CRPS likely to require supports from the NDIS for their lifetime?

As outlined in the expert report by s47F - personal privacy, after approximately three years whatever resulting functional impairment the person has is likely to be permanent. Whether their functional impairment is severe enough to meet the NDIS access requirements is entirely dependent on their individual circumstances.

14 Votrubec, loc cit.

15 Ibid.

Section 25 Early Intervention Considerations

How do early intervention access considerations apply to people with CRPS?

Early intervention considerations do not apply to CRPS. Any services that a person with CRPS would receive before the condition is considered permanent would be considered time-limited health treatments.

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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 #7 =Pesonaiprvacey, 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

1. What is the aetiology of this condition?
2. What is the impairment, if any?
3. What medical and allied health specialties are involved in: a) Diagnosis and b) Treatment of this condition?
4. 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.
5. Is this condition results from an impairment, what is the likelihood that this impairment will be permanent?
6. Are individuals suffering this condition likely to require lifelong support? If so, what types of supports are likely to be required?
7. Would symptom management through interventions such as medication change, pain management, exercise programs etc. reduce the functional impact of the diagnosis and associated disability?
8. How prevalent is the incidence of Chronic Fatigue Syndrome being diagnosed as a standalone condition as opposed to being diagnosed as part of comorbidity?
9. 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:

• “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”.

• “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.

Research Request — Central Sensitivity Syndromes and Functional Neurological Disorder Page 16 of 45

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:

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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 month. 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®™ 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 redacted 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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Fibromyalgia

Expert report

In January 2018 the Technical Advisory Team commissioned a report on Fibromyalgia from an Australian expert in the field — Professor #7 fes™aipm=, MB BS PhD (Medicine), FAFRM (RACP). The report was intended to assist with specific TAT AAT Fibromyalgia 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:

• 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 Fibromyalgia being diagnoses as a stand-alone condition as opposed to being diagnosed as part of comorbidity?

• Other comments: This full report is embedded in APPENDIX E for reference.

Information additional to the expert report are listed below.

Summary of Fibromyalgia

There is no cure for fibromyalgia, but symptoms can be managed. Better Health Channel list that:

“Fibromyalgia is a condition in which people experience symptoms that include widespread pain and tenderness in the body, often accompanied by fatigue and problems with memory and concentration. Fibromyalgia affects two to five per cent of the population, mainly”

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Section 24 Disability Requirement Considerations

What are the common evidence based clinical, medical and other treatments for Fibromyalgia?

• See 5.4 of the NDIS (Becoming a Participant) Rules 2013.

Better Health Channel notes that there is no cure of fibromyalgia, but there are effective management and treatment options that reduce symptoms and list the following management options:

• Education — you need to understand your condition in order to manage it well. The more you know about your condition (for example, what triggers flares, how to manage pain and fatigue) the more control you’ll have. Understanding your fibromyalgia means you’ll be able to make informed decisions about your healthcare and play an active role in its management.

• Exercise — regular physical activity has lots of general health benefits. It can also help you manage the symptoms of your condition. When you start exercising regularly you should notice an improvement in the quality of your sleep, an increase in energy levels, a reduction in fatigue, and improvements in your overall strength and fitness.

• Learn ways to manage your pain — there are many things you can do to manage pain, and different strategies will work for different situations. For example, heat packs can help ease muscle pain, cold packs can help with inflammation, gentle exercise can help relieve muscle tension. Try different techniques until you find what works best for you.

• Stress management and relaxation — stress may aggravate your symptoms. Things you can do to manage stress include planning your day and setting priorities, using relaxation techniques such as going for a walk or listening to music and avoiding people and situations that cause you stress.

• Balancing rest and activity — plan your activities to make the most of your energy by alternating periods of activity with rest. Break large jobs down into small achievable tasks so that you don’t overdo things.

• Staying at work — it’s good for your health and wellbeing. Talk to your doctor or allied healthcare professional about ways to help you to get back to or to stay at work.

• Sleep — it’s important to get a good night’s sleep when you have fibromyalgia. Poor sleep, both quantity and quality, can aggravate your symptoms.

• Massage —can help with muscle relaxation and stress management.

• Nutrition — eating a balanced diet can help provide you with better energy levels, help to maintain your weight, and give you a greater sense of wellbeing.

28 Better Health Channel, ‘Fibromyalgia’, March 2017, https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/fibromyalgia, accessed 28 November 2019.

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Research on Fibromyalgia Treatment Options

Medication and Non-Pharmacologic Treatments for Fibromyalgia

Medication

• Combined with other strategies, medication may be used to manage pain, reduce stress or promote sleep. Different types of medication that your doctor may recommend:
  • Pain-relievers (analgesics) such as paracetamol can provide temporary pain relief.
  • Creams and ointments can be rubbed into the skin over a painful area for temporary pain relief.
  • Anti-depressant medications may be used in small doses to reduce pain and help you sleep.

Non-Pharmacologic Treatment Options (2015 Research Publication)

• Patient education
• Cognitive behavioral therapy
• Biofeedback
• Mind-body techniques
• Meditative movement therapies (tai chi, yoga, qigong)
• Paced breathing/meditation
• Complementary therapies (myofascial release massage, acupuncture)
• Creative work (art, music, dance therapy)
• Workbooks (anxiety, post-traumatic stress disorder, behavior modification)
• Water-based exercise
• Graded aerobic exercise
• Strength training
• Hypnotherapy
• Chiropractic manipulation
• Transcutaneous electrical nerve stimulation
• Sleep hygiene

When is Fibromyalgia Permanent or Likely to be Permanent for 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.

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²⁹ Better Health Channel, ‘Fibromyalgia’, loc cit.

³⁰ K. Fleming and M. Volcheck,

Research Request - Central Sensitivity Syndromes and Functional Neurological Disorder

Expert Report from Prof #7

The expert report states that:

• Fibromyalgia cannot be considered permanent in the same way as many health conditions, because the underlying impairment is pain and this varies considerably over time and in response to treatments and life situations.
• Fibromyalgia cannot be regarded as permanent because it is responsive to treatment (see above) and is likely to vary in intensity at different times due to a variety of factors.
• Most people continue to experience symptoms over a long period but approximately 25% improved in the long term. However, severity worsened in about 40%.

What type of medical treatment and review is required to determine permanency?

• See 5.6 of the NDIS (Becoming a Participant) Rules 2013.

Fibromyalgia cannot be regarded as permanent because it is responsive to treatment. There is no guideline or evidence of treatment or review in determining permanency. See expert report.

What are the typical functional impairments associated with Fibromyalgia?

The common functional impairments associated with Fibromyalgia generally fall under the mobility, self-care, self-management and social interaction categories.

• While pain is the most important symptom in fibromyalgia, others such as fatigue, nonrefreshed sleep, mood disturbance and cognitive impairment are common, but not universal.
• Ten to 30% of people with fibromyalgia will have other rheumatological conditions and people with fibromyalgia more likely have psychiatric disorders, including depression, anxiety, obsessive-compulsive disorder, and posttraumatic stress disorder.

Is someone with Fibromyalgia likely to require supports from the NDIS for their lifetime?

The expert report states that:

• Specifically, people with fibromyalgia do not require lifelong support and, indeed provision of this support is likely to be harmful to them.
• While pain may interfere with daily activities to some extent the presence of pain is not a reason to avoid specific activities.

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Section 25 Early Intervention Considerations

How do early intervention access considerations apply to people with Fibromyalgia?

Early intervention considerations do not apply to Fibromyalgia.

Fibromyalgia “is likely to be minimised by early diagnosis and intervention . . . there is increasing evidence for mechanism-based management approaches to this syndrome. These are likely to be more effective if introduced early, making timely diagnosis in general practice even more important.” 31

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31 R. Kwiatek, “Treatment of fibromyalgia”, Vol 40, pp. 179-183, 2017, https://www.nps.org.au/australian-prescriber/articles/treatment-of-fibromyalgia

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Functional Neurological Disorder (FND) aka Conversion Disorder

Summary of FND

The U.S. National organization for rare Disorders identifies FND as follows:

• A medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis or stroke.
• FND can encompass a wide variety of neurological symptoms, such as limb weakness or seizures.
• FND is a condition at the interface between the specialties of neurology and psychiatry.
• Conventional tests such as MRI brain scans and EEGs are usually normal in patients with FND. This had led, historically, to the condition being relatively neglected by both clinicians and researchers. However, it is now established that FND is a common cause of disability and distress, which may overlap with other problems such as chronic pain and fatigue.
• Encouraging studies support the potential reversibility of FND with specifically tailored treatments.
• New scientific findings are influencing how patients are diagnosed and treated which is creating an overall change in attitude towards people with FND.
• Older ideas that FND is “all psychological” and that the diagnosis is made only when someone has normal tests have changed since the mid-2000s. The new understanding, including modern neuroscientific studies, has shown that FND is not a diagnosis of exclusion. It has specific clinical features of its own and is a disorder of the nervous system functioning in which many perspectives are necessary. These vary a lot from person to person. In some people, psychological factors are important, in others they are not.

Section 24 Disability Requirement Considerations

What are the common evidence based clinical, medical and other treatments for FND?

• See 5.4 of the NDIS (Becoming a Participant) Rules 2013. The U.S. National organization for rare Disorders provides comprehensive information on common treatment and therapy options: *

Overview

FND can be hard to understand and most people haven’t heard of it. Treatment should start with a clear and supportive explanation of the positive clinical features that have allowed the diagnosis to be made, even though scans and other laboratory tests may be normal.

When it goes well, understanding the diagnosis enables the patient to see that they have a genuine and relatively common condition which has the potential for improvement over time. This creates a foundation for treatment to build upon. Written information, like that available at www.neurosymptoms.org or www.fndhope.org may help individuals comprehend this complex and difficult to understand disorder.

Evidence is now emerging for the efficacy of certain treatments, especially physiotherapy for motor symptoms and a type of psychological therapy called cognitive behavioral therapy (CBT) for attacks or seizures. Specialized types of physiotherapy and CBT have been developed for FND. Other therapies such as speech therapy and occupational therapy may also have a role depending on the symptoms.

Physical Therapy

For patients with motor symptoms such as limb weakness, gait problems or movement disorder, physical therapy from a therapist who understands something of FND can be helpful. Physiotherapy approaches are active treatments that focus on retraining movement patterns that have gone wrong. There is some evidence from clinical trials that physiotherapy designed specifically for FND can be helpful for some patients. In recent years we have learned that physical therapy for FND is different from that used for stroke or MS in many ways. For example, patients with stroke benefit from being asked to focus on the affected body part, whereas in FND that tends to make things worse. Physical therapy for FND promotes ‘automatic movements’ and reduces the abnormal brain patterns that have been interfering with movement.

Psychological Therapies

CBT is generally the first line of treatment for patients with dissociative (non-epileptic) seizures or attacks as part of their FND and is supported by clinical trials. Therapy includes time to learn more about their attacks and recognizing brief warning symptoms and learning techniques to regain control. For some patients it is helpful to look more widely at thoughts, emotions, and experiences that could have played a role in the development of symptoms. For those patients without anxiety and depression, psychological therapy may still be useful in regaining confidence. FND itself is often experienced as a stressful condition to manage and live with. Other types of psychological therapies can also be used depending on the individual patient, e.g. psychodynamic interpersonal therapy (PIT) or more trauma-focused work for patients who have had such experiences.

Occupational Therapy

Occupational Therapy assists patients in finding adaptations and regaining confidence in their ability to carry out daily activities in the home or workplace. Occupational therapy can help build on other therapies to contribute to a better overall quality of life.

Speech Therapy

For patients with speech symptoms as part of FND, speech therapy is an important part of treatment. Like physical therapy, the approach is different from that used, for example, after a stroke and patients benefit from seeing therapists confident in this area.

Other Therapies

There is no research-based evidence that any specific medication is beneficial for FND, but medications may be useful for other symptoms commonly occurring with FND such as pain, migraine or anxiety. Other therapies are being investigated in research studies

When is FND 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.

Research indicates that the condition can improve and that improvement is dependent on the individual patient’s circumstances:

• Recovery is an individual process and what works for one person may not work for another, so it is important to find what is right for the individual. *°

• FNDs are not seen as degenerative, however symptoms for people can become chronic or worsen. Recovery from symptoms is possible, or symptoms can become manageable, but may be dependent on triggers, co-existing conditions and receiving appropriate treatment. *°

• Due to the diversity of symptoms that may present with a Functional Neurological Disorder, and the varied potential causes/triggers that can differ from person to person, treatment plans must be tailored to suit the person’s individual need, with all health aspects being taken in to consideration. *°

• Evidence is now emerging for the efficacy of certain treatments, especially physiotherapy for motor symptoms and a type of psychological therapy called cognitive behavioral therapy (CBT) for attacks or seizures. Specialized types of physiotherapy and CBT have been developed for FND. Other therapies such as speech therapy and occupational therapy may also have a role depending on the symptoms. *°

• The symptoms of conversion disorder usually do not last long. Generally, the more quickly the symptoms start, the more rapidly they go away. If the symptoms came about in response to a clearly defined stress, the symptoms are likely to last only a short time. More severe symptoms, such as paralysis or blindness, also may not last a long time because it is harder to sustain symptoms that interfere significantly with daily activities. A less severe symptom (such as tremor) or asymptom that is repeated and limited (such as seizure) can continue or come and go, depending on the person’s circumstances. *°

---

34 FND Australia Support Services,

What type of medical treatment and review is required to determine permanency?

• See 5.6 of the NDIS (Becoming a Participant) Rules 2013.

Available information indicates that current medical treatments and reviews are not likely to determine permanency.

What are the typical functional impairments associated with FND?

According to FND Australia Support Services Inc., °°

• Functional neurological disorder can involve a variety of neurological symptoms affecting the motor, sensory and cognitive functions of the body.

• FND symptoms arise out of a disorder in the functioning of the nervous system and not damage to the nervous system, although FND may overlap and co-exist with other neurological diseases.

• Symptoms may include, but are not limited to:

  • Bowel and bladder problems
  • Seizure-like episodes
  • Vision problems and blindness
  • Severe fatigue
  • Cognitive issues
  • Paralysis and severe limb weakness
  • Gait disorder
  • Abnormal movements
  • Tremor
  • Speech and swallowing difficulties

Is someone with FND likely to require supports from the NDIS for their lifetime?

As it appears that recovery from the condition is possible, someone with FND is not likely to require supports from NDIS for their lifetime.

3° END Australia Support Services Inc., “What are the typical FND symptoms”, [website], 2019, hhttps://fndaus.org.au/fnd-symptoms, (accessed 18 December 2019)

Research Request — Central Sensitivity Syndromes and Functional Neurological Disorder Page 29 of 45 Page 98 of 335

Section 25 Early Intervention Considerations

How do early intervention access considerations apply to people with FND?

Early intervention considerations do not apply to FND, as there is likelihood for improvement of the condition.

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Research Request — Central Sensitivity Syndromes and Functional Neurological Disorder Page 30 of 45 Page 99 of 335

Next suggested steps

1. The expert reports commissioned on CRPS, fibromyalgia and CFS could be shared in full with the NAWM. Since these are comprehensive reports that are signed off by experts in the field there is no associated risk.
2. TAT could potentially commission a similar expert report on FND (conversion disorder).
3. The Agency could commission a whole package of these expert reports to assist with access determinations for specific complex conditions.
4. The information collated in this document can be used by TAT advisors to respond to TAPS access enquiries from NAWM.

Reference List

• R. Kwiatek, “Treatment of fibromyalgia”, Vol 40, pp. 179-183, 2017, https://www.nps.org.au/australian-prescriber/articles/treatment-of-fibromyalgia

• NORD, “Functional Neurological Disorder”, [website], 2019, https://rarediseases.org/rare-diseases/fnd, (accessed 18 December 2019)

• CSS Survivor’s Guide, “Central Sensitivity Syndrome (CSS) - Central Sensitization”, [website], 2019, http://css.dewarlorx.com, (accessed 18 December 2019)

• L. Kindler et al., “Central Sensitivity Syndromes: Mounting Pathophysiologic Evidence to Link Fibromyalgia with other Common Chronic Pain Disorders”, Pain Manag Nurs., Vol 12, No 1, pp. 15-24, 2012, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3052797

• 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

• Mayo Clinic, “Complex regional pain syndrome”, [website], 2019, https://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/symptoms-causes/syc-20371151, (accessed 18 December 2019)

• Network CRPS Australia, “Complex regional pain syndrome”, [website], 2019, https://crpsnetworkaustralia.org.au/information-for-new-patients, (accessed 18 December 2019)

• 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

• K. Fleming and M. Volcheck, “Central Sensitization Syndrome and the Initial Evaluation of a Patient with Fibromyalgia: A Review”, Rambam Maimonides Med J., Vol 6. No 2, 2015, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4422459

• FND Australia Support Services Inc., “What are the typical FND symptoms”, [website], 2019, https://fndaus.org.au/fnd-symptoms, (accessed 18 December 2019)

• FND Australia Support Services, “A path to recovery”, [website], 2019, https://fndaus.org.au/functional-neurological-disorder-recovery, (accessed 19 December 2019)

• FND Action, “Treatment”, [website], 2019, https://www.fndaction.org.uk/treatment, (accessed 19 December 2019)

Appendix A — AAT case summary

Name	Year	Diagnosis	Outcome
iaiocsd	2019	CRPS	Went to hearing and Agency lost case - Access granted. This was the first case of it is kind to go to hearing.
Phi cad al sian	CFS, Fibromyalgia, PoTS	Hearing Oversight Committee conceded due to Agency own OT assessment noting needed assistance to access community
ig fd aes 2017	CRPS	Agency conceded with advice from Counsel. Evidence supported substantially reduced functioning in mobility and self-care.
Po Fzperecnalippacy	CFS	Hearing Oversight Committee conceded due to poor prospects advice from Counsel
Pees	Fibromyalgia	Conceded under Early Intervention
fA Dersanal povaey	Fibromyalgia, depression	Agency conceded under s21(2) prescribed program NSW
ci te teres	CRPS	Withdrawn at Hearing
oT	CRPS	Still on-foot
yin sabnerny 2019	CRPS	Upcoming hearing as of 28/11/19
SA7F - personal privacy 2019	Fibromyalgia (also psoratic arthritis, depression/anxiety)	Upcoming hearing as of 28/11/19

Appendix B — Previous TAT advices

HPRM Record	Title	Diagnosis	Key passages of outcome / recommendation
When searching HPRM for ‘chronic regional pain syndrome’:

NED18/241094 | ADV 2018 3098 ACC eligibility not met for participant with complex regional pain syndrome, functional neurological disorder and chronic fatigue 20181218 RTO573 | CRPS, FND, CFS | Suggested access be revoked as the participant does not meet eligibility for “other physical” disability under s24 and s25 of the NDIS Act. | | NED17/308149 | ADV 2017 0550 ACC prospective participant with Benign joint hypermobility syndrome and chronic regional pain syndrome 20170926 LM0044 | CRPS, plus other | Participant did not meet S24 or S25 access criteria, and should be made ineligible for the NDIS. If the participant would like to appeal the decision, they should be encouraged to provide further information relating to all their conditions (including PTSD, Anorexia nervosa migraine syndrome), treatments, prognosis, and how they impact on her functional capacity. | | NED17/276004 | ADV 2017 1097 ACC Review of access for a 21 year old woman with speculated diagnosis of chronic regional pain syndrome 20170905 CM0093 | CRPS | The participant does not meet the access requirements set out in Section 24 and/or 25 of the NDIS Act (2013) and her access should be revoked. Access should be revoked in the instance that further information cannot be provided to meet S24 1(b) and 1(e) as per the table above. | | NED17/70647 | ADV 2016 1790 ACC Review of access for a potential participant with Chronic Regional Pain Syndrome (CRPS) and fibromyalgia 20170602 LM0044 | CRPS, fibromyalgia | In relation to her CRPS, participant does not meet S24 1b, 1c, 1e or any of the S25 early intervention criteria. In relation to her condition of Fibromyalgia, participant does not meet S24 1b, 1c, 1e or any of the S25 early intervention criteria. In relation to her condition of Shoulder Tendinopathy, participant does not meet any of the $24 or $25 criteria. | | NED17/48791 | ADV 20160869 ACC - Participant with Fibromyalgia Chronic Fatigue Syndrome Complex regional Pain Syndrome (CRPS) Dysphagia PTSD Depression Anxiety | CFS, fibromyalgia, CRPS, PTSD, anxiety, depression | Under section 24 and 25 of the NDIS Act 2013 a prospective participant needs to meet all listed criteria to meet the disability or early intervention requirements. Participant does not meet the following:

Fibromyalgia / Chronic fatigue syndrome: S24 1c, 1e and $25 criteria Complex regional Pain Syndrome (R foot): $24 1a, b, c, e or $25 criteria Dysphagia (difficulty swallowing): $24 1b, e or $25 criteria Hearing loss: $24 1c, d, e or $25 criteria |

Research Request - Central Sensitivity Syndromes and Functional Neurological Disorder

HPRM Record | Title Diagnosis Key passages of outcome / recommendation

| | | | | — | — | — | — | | | | | Psychosocial conditions: $24 1c, 1e or S25 criteria | | NED17/48293 | ADV 20161485 ACC - chronic reflex sympathetic dystrophy (also called complex regional pain syndrome CRPS) and a range of comorbid conditions 20170324 LM0044 | CRPS, plus other | Does not meet $24 or $25 access criteria and should be made ineligible to the NDIS. | | NED17/9641 | ADV 20161047 ACC Review of access for participant with chronic regional pain syndrome 20170127 LM0044 | CRPS, brachial plexus plexopathy, psychosocial | Does not meet Section 24 or Section 25 eligibility requirements and it is recommended that her access to the NDIS revoked.

Participant does not meet the following criteria:

Brachial plexus plexopathy — $24 1(b) and 1(e) or any of the S25 criteria of the NDIS ACT Chronic Regional Pain Syndrome — $24 1(b) and 1(e) or any of the S25 criteria of the NDIS ACT Depression / anxiety — S24 1(a), 1(b), 1(c), 1(e) or any of the S25 criteria of the NDIS ACT | | | | | When searching HPRM for ‘fibromyalgia’: Note: there are approximately 40 advices relating to fibromyalgia. Only recent or primary disability ones have been listed below.

NED19/306629 ACC 2019 3107 51 year old with Myalgic Encephalomyelitis (Chronic Fatigue) Fibromyalgia and Postural Tachycardia Syndrome 20191115 KTU174 (002)

ME/CFS, fibromyalgia, PoTS Based on the information provided, the participant has a disability resulting from a combination of Myalgic Encephalomyelitis (chronic fatigue), Postural Tachycardia Syndrome (POTS) with postural intolerance, treatment resistant Cerebral Spinal Fluid leak and Fibromyalgia (24.1.a), that these impairments are permanent (24 1.b) and affects her capacity for social and economic participation (24 1.d). Whilst she seems to have some functionality, exertion exacerbates her fatigue and further reduces her capacity which satisfies that she has a substantially reduced functional capacity (24.1 c) and that she is likely to require lifetime supports (24.1 e).

On the basis of available information it is considered that that the participant meets section 24 access eligibility criteria to become a participant in the NDIS as set out in The NDIS Act 2013 and the NDIS (Becoming a participant) Rules 2016.

Research Request — Central Sensitivity Syndromes and Functional Neurological Disorder Page 35 of 45 Page 104 of 335

HPRM Record

HPRM Record	Title	Diagnosis	Key passages of outcome / recommendation
NED18/177140	ADV 2018 0860 ACC Review Access Lupus Fibromyalgia Chronic Fatigue Syndrome Sjogrens 20180831 CCQ988	Fibromyalgia, lupus, CFS, Sjogren’s Syndrome, sensory processing disorder, chronic headaches, chronic constipation, anxiety and depression, Type 1 latent onset autoimmune diabetes.	Based on the available evidence XXX does not meet the following criteria at this time:

• Systemic Lupus Erythematosus (SLE) – does not meet any of the S24 or S25 criteria at this time
• Fibromyalgia – does not meet any of the S24 or S25 criteria at this time
• Chronic Fatigue Syndrome (CFS) - does not meet S24 1b, 1c, 1e, 2 and any of the S25 criteria
• Sjogren’s Syndrome – does not meet any S24 1a, 1c, 1d, 1e, 2 or S25 criteria | | NED17/359595 | ADV 2016 1432 ACC Review of access Persistent depressive disorder lower back pain and Fibromyalgia CHG151 20171115 | Fibromyalgia, chronic pain, depression | Under section 24 and 25 of the NDIS Act 2013 a prospective participant needs to meet all listed criteria to meet the disability or early intervention requirements. In this case, based on the available information, it is considered that the participant does not meet the following: Psychosocial disability – Does not meet S24 1c) or 1e), nor does she meet $25 1b), 1c) i, ii, iii or iv). Fibromyalgia, and lower back pain - Does not meet $24 criteria 1b), 1c) or 1e), nor does she meet $25 1a) i, 1b), or 1c) i, ii, iii or iv). |

When searching HPRM for ‘functional neurological disorder’: | NED18/87417 | ADV 2017 2596 AT Q6 Edge HD PWC with Spex seating adult with Functional Neurological Disorder access not met 20180327 JBO080 | FND | There is insufficient information available to determine if the participant meets section 24 (1.b,c,&e), 24 (2) and section 25 as per the table and paragraph above. However there is also insufficient evidence to confirm that the participant’s access should be revoked at this stage. Additional information is required to determine if the participant meets the access requirements to be a participant of the NDIS. Information from medical or allied health professionals should include a comprehensive outline of the participant’s diagnosis, treatments to date, recommended treatments and prognosis and information outlining the impact of her impairments on her functional capacity.

Research Request — Central Sensitivity Syndromes and Functional Neurological Disorder Page 38 of 45

FOI! 24/25-0247

FOR INTERNAL TAT USE ONLY

HPRM Record	Title	Diagnosis	Key passages of outcome / recommendation
NED18/200062	ADV 20181860 ACC Review of access for participant with functional neurological disorder LM0044 20181026	FND	On the basis of the available information, it cannot be confirmed that XX meets S24 1b or 1c, or the S25 criteria, however there is also insufficient information to confirm that her access should be revoked.

2. As XX’s plan has expired, a new plan incorporating provision of reasonable and necessary supports should be approved.
3. Further information should be requested as outlined above during the planning period. If information cannot be obtained to establish if XX’ impairments are permanent, consideration into the appropriateness of an independent assessment may be required. | | NED18/241092 | ADV 2018 3098 ACC eligibility not met for participant with complex regional pain syndrome, functional neurological disorder and chronic fatigue 20181218RTO573 | CRPS, FND, CFS | Based on the information provided the participant does not meet s24.1(c)(e) and 25.3(a) of the NDIS Act. As such the participant does not meet the eligibility criteria for access, or early intervention, to the Scheme. It is considered that the participant’s support needs are best met by the health and mental health service systems as per the recommendations of the Neurologist and Orthopaedic Surgeon. | | NED19/17532 | ADV 2018 5321 ACC 17 year old prospective participant with Functional Neurological Disorder 20190221 CCQ988 | FND | While it is possible that the prospective participant will meet the s24 NDIS access criteria, further information will be required in order to be satisfied that s241b is met. Specifically information relating to the specific treatment inventions completed and whether or not there was any improvements as a result of these interventions over the course of her multi-disciplinary inpatient and outpatient treatment program. | | NED19/36281 | ADV 2018 6190 ACC initial access review adult conversion disorder functional neurological symptoms disorder anxiety depression dec 20190322 RTO573 | FND, psychosocial | The Delegate should uphold access not met decision for functional neurological disorder/conversion disorder as not having met criteria under section 24 or 25 of the NDIS Act. | | NED19/38699 | ADV 2018 6316 ACC initial access adult functional neurological disorder dec 20190401 RTO573 | FND | Based on the available information the prospective participant does not meet criteria for early intervention under section 25 of the NDIS Act for functional neurological disorder. There is insufficient information to determine her condition is permanent under parts 1(a)(i)(ii), and if supports are more |

Research Request — Central Sensitivity Syndromes and Functional Neurological Disorder

Page 39 of 45 Page 108 of 335

FOI! 24/25-0247

FOR INTERNAL TAT USE ONLY

HPRM Record	Title	Diagnosis	Key passages of outcome / recommendation
			appropriately funded through mainstream services as set out under section 25(3).
NED19/175892	ADV 20188377 HMOD Funding request for home modifications for a 22 year old female with functional neurological disorder 20190822 DSS550	FND	This advice was about vehicle and home modifications.
NED19/183942	ADV 2019 1088 EML ACC 33yr prospective participant with CRPS and functional neurological disorder 20190828 KHM067	FND, CRPS, oedema syndrome and anxiety	there is currently insufficient information to satisfy that she meets all section 24 eligibility requirements and further information should be sought as outlined in the opinion section above.
NED19/191070	ADV 2019 0455 ACC Adult with Functional Neurological Disorder and Chronic Pain 20190904 KTU174	FND, CRPS	There is currently insufficient information to satisfy that she meets all s24 eligibility requirements and further information should be sought regarding the treatments and interventions undertaken to address these conditions.
NED19/196505	ADV 2019 0751 ACC Adult with functional neurological disorder paraplegia depression and leukaemia 20190909 KTU174	FND, psychosocial, non-organic paraplegia	On the basis of information available, it cannot be considered that

FOR INTERNAL TAT USE ONLY

HPRM Record	Title	Diagnosis	Key passages of outcome / recommendation
			In relation to Major Depression: Does not meet $24 1b, 1c, le, 2 or $25 1a, 1b, 1ci, cii, ciii or 3a
In relation to Fibromyalgia: Does not meet any of the S24 or S25 criteria
In relation to Irritable bowel: Does not meet any of the $24 or $25 criteria.

Appendix C - Report on Complex regional pain syndrome

Double click on report front page to open the full PDF report.

21 June 2018

Mr Tony ae

Technical Advisory Team National Disability Service

Dear Tony, We are pleased to provide you with signed drafts of our advice to the NDIS regarding: Chronic non-cancer pain; Complex regional pain syndrome

With kind regards, Dr SPB, Dip Med (pain management), FANZCA, FFPM(ANZCA)

Research Request — Central Sensitivity Syndromes and Functional Neurological Disorder Page 43 of 45 Page 112 of 335

Appendix D - Report on Chronic Fatigue Syndrome

Double click on report front page to open the full PDF report.

MD FRACP Professor of Medicine Consultant Infectious Diseases Physician Provider No: s47F-personal privacy All Correspondence to Private Consulting Rooms: s47F-personal privacy Appointments: tel: s47F-personal privacy fax: s47F-personal privacy email: s47F-personal privacy

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 its 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 syndrome, plecing 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 (Le cervical lymph nodes)*. The fatigue state is characterised by a sustained worsening of symptoms after

Research Request — Central Sensitivity Syndromes and Functional Neurological Disorder Page 44 of 45 Page 113 of 335

Appendix E - Report on Fibromyalgia

Double click on report front page to open the full PDF report.

eee see gy ener Consultant Physician in Rehabilitation Medicine 18 January 2018 Ms Wendy FP Acting Director Technical Advisory Team- Operational Guidance NDIA Dear Ms HT

Request for expert information and advice - fibromyalgia

Thank you for your request, dated 22 December 2017, that I provide information and advice regarding fibromyalgia to the National Disability Insurance Agency (NDIA). This is a revised report that has been note the “issues to consider” that you outlined. These, and my responses, are shown below.

This report is based on a review of the scientific literature. I conducted a systematic review and meta-synthesis to update the systematic review of Clauw (2014). The database, Medline, was searched using the terms “fibromyalgia” and “meta-analysis” from 2014 to current. This was to bring the search strategy of Clauw (2014) up to date.

My responses are:

1. What is the aetiology of fibromyalgia? Fibromyalgia is a condition of generalized body pain without a known cause or cure (Fitzcharles et al 2013). Its aetiology is therefore unknown. It is hypothesized that certain people are more likely to experience chronic widespread pain. This is due to a combination of environmental and genetic influences (Clauw et al 2014). It is definitely more prevalent in women and men in a ratio of 2:1 (Clauw 2014).

2. What is the impairment, if any? You have advised that “impairment” has been interpreted in this context to mean a loss of, or damage to, a physical, sensory or mental function —see Mulligan and NDIA [2014] AATA 374. This decision states that the words “disability” and “impairment” are not defined in the NDIS Act or Rules. It then goes on to state “Impairment commonly refers to a loss of, or damage to, a physical, sensory or mental function”.

The central component of fibromyalgia is generalised pain. Pain is a sensory function. This is supported by the International Association for the Study of Pain’s definition of pain as “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such

Research Request — Central Sensitivity Syndromes and Functional Neurological Disorder Page 45 of 45 Page 114 of 335