NDIA Accountability Project

This project is in DRAFT

Fibromyalgia

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FOR INTERNAL TAT USE ONLY

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The expert report from Prof. Ian Cameron 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.

The expert report from Prof. Ian Cameron states that:

  • 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 from Prof. Ian Cameron 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 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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FOR INTERNAL TAT USE ONLY ndis_

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:

*32 NORD, “Functional Neurological Disorder”, [website], 2019, https://rarediseases.org/rare-diseases/fnd, (accessed 18 December 2019) *33 ibid

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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 genine 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 pattens 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 in 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 dividual 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

FOR INTERNAL TAT USE ONLY ndis

Not everyone with FND can benefit from treatment even if they do understand their condition and are well motivated.

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. 37

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 a symptom that is repeated and limited (such as seizure) can continue or come and go, depending on the person’s circumstances. *

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

35 ibid

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

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

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

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

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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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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

Appendix A — AAT case summary

Name Year Diagnosis Outcome
redacted: s47F - personal privacy 2019 CRPS Went to hearing and Agency lost case - Access granted. This was the first case of it kind to go to hearing.
CFS, Fibromyalgia, PoTS Hearing Oversight Committee conceded due to Agency own OT assessment noting needed assistance to access community
2017 CRPS Agency conceded with advice from Counsel. Evidence supported substantially reduced functioning in mobility and self-care.
CFS Hearing Oversight Committee conceded due to poor prospects advice from Counsel
Fibromyalgia Conceded under Early Intervention
Fibromyalgia, depression Agency conceded under s21(2) prescribed program NSW
CRPS Withdrawn at Hearing
CRPS Still on-foot
2019 CRPS Upcoming hearing as of 28/11/19
2019 Fibromyalgia (also psoriatic arthritis, depression/anxiety) Upcoming hearing as of 28/11/19

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Appendix B — Previous TAT advices

HPRM Record Title Diagnosis Key passages of outcome / recommendation
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.
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.
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 $24 1 (b) and 1 (e) as per the table above.
CRPS, fibromyalgia In relation to her CRPS, participant does not meet $24 1b, 1c, 1e or any of the $25 early intervention criteria.
Fibromyalgia In relation to her condition of Fibromyalgia, participant does not meet S24 1b, 1c, 1e or any of the S25 early intervention criteria.
Shoulder Tendinopathy In relation to her condition of Shoulder Tendinopathy, participant does not meet any of the $24 or 825 criteria.
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: $24 1c, 1e and S25 criteria

Complex regional Pain Syndrome (R foot): $24 1a, b, c, e or $25 criteria

Dysphagia (difficulty swallowing): S24 1b, e or $25 criteria

Hearing loss: $24 1c, d, e or $25 criteria

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Psychosocial conditions: $24 1c, 1e or S25 criteria

CRPS, plus other

Does not meet $24 or $25 access criteria and should be made ineligible to the NDIS.

CRPS, brachial plexus plexopathy, psyche

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 $25 criteria of the NDIS ACT
  • Chronic Regional Pain Syndrome — $24 1(b) and 1(e) or any of the $25 criteria of the NDIS ACT
  • Depression / anxiety — $24 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

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.

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HPRM Record

Title:

Diagnosis: fibromyalgia

Key passages of outcome / recommendation:

While it is recognised that the participant has a physical impairment due to fatigue and chronic pain which results in reduced functional capacity, there is insufficient information to confirm that it is likely to be permanent (24.1 (b)) or that she experiences substantially reduced functional capacity across any domain (24.1 (c)) and is likely to require lifetime NDIS supports (s24.1 (e)).

Pols, fibromyalgia, plus other

In relation to the s241b criteria, while it is acknowledged that Christine has a number of conditions that may be likely to be permanent, it cannot be considered that she meets the s241b permanency criteria at this stage.

In addition it cannot be considered that her conditions result in substantially reduced functional capacity (24 1.c) or that she is likely to require NDIS supports for her lifetime (24 1.e).

Fibromyalgia,

Access met.

Based on the available information XX meets Section 24 access criteria. The information provided satisfies that XX has a permanent impairment which results in physical disability (24.1 a and b). It is also satisfied that XX has a substantially reduced functional capacity across the domains of mobility and self-care as evidenced by her need for equipment alongside person to person supports to complete these activities (24.1.c). This impairment also affects her capacity to participate in his community (24.1.d and she will require NDIS supports for her lifetime.

CFS, fibromyalgia, lymes, depression, plus other

Based on the information provided the prospective participant does not meet criteria 24.1(b) of the NDIS Act 2013 for permanency. The information confirms that the prospective participant experiences Depression, Anxiety and PTSD, according to recent Psychologist report, however the report from Neurologist dated 20 March 2019 advises “he does not describe himself as overtly anxious or depressed but he does worry about his future”. Further, symptoms associated do not meet criteria 24.1(c) of the

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HPRM Record

HPRM Record Title Key passages of outcome / recommendation
NDIS Act 2013 for substantially reduced functional capacity. As such, it is not likely the prospective participant will require lifetime support of the NDIS and does not meet section 24.1(e) of the NDIS Act 2013.
There is currently insufficient information available to determine whether or not the prospective participant meets the $24 or $25 NDIS access criteria. Specifically, it is not considered that any of the $24 or S25 criteria are met for the conditions of Fibromyalgia, inflammatory myopathy, osteoporosis, Graves disease or depression as there is no information available relating to these conditions. In relation to the condition of Myasthenia Gravis it is not considered that $24 1b, 1c, 1e or any of the S25 criteria is met.
This advice as about R&N supports relating to fibromyalgia and CFS, when the participant’s primary disability was psychosocial.
Under section 24 and 25 of the NDIS Act 2013 a participant needs to meet all listed criteria to meet the disability or early intervention requirements. On the basis of the information available at this time, the participant does not meet $24 1b, le or any of the S25 criteria in relation to her fibromyalgia and chronic pain conditions.
From the information provided it cannot be considered that the participant meets the NDIS eligibility criteria under Section 24.1(b) and (e), and Section 25.1(a)(i), (b), (c)(i), (c)(ii), (c)(iii) and 3(a) of the NDIS Act 2013.
There is insufficient information to consider that the participant meet the NDIS eligibility criteria (S24 and S25) at this time, however it is possible with further information as outlined above, that the participant may meet for the condition of degenerative musculoskeletal condition.

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HPRM Record

Title

Diagnosis

Key passages of outcome / recommendation

redacted: s47F - personal privacy

Fibromyalgia, lupus, CFS, Sjogren’s Syndrome, sensory processing disorder, chronic headaches, chronic constipation, anxiety and de depression, Type 1 latent onset autoimmune diabetes.

Based on the available evidence XXX does not meet the following criteria at this time:

e Systemic Lupus Erythematosus (SLE) — does not meet any of the $24 or $25 criteria at this time

e Fibromyalgia — does not meet any of the $24 or S25 criteria at this time

e Chronic Fatigue Syndrome (CFS) - does not meet $24 1b, 1c, 1e, 2 and any of the $25 criteria

e Sjogren’s Syndrome — does not meet any $24 1a, 1c, 1d, 1e, 2 or S25 criteria

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 $24 1c) or 1e), nor does she meet S25 1b), 1c) i, ii, iii or iv).

Fibromyalgia, and lower back pain - Does not meet S24 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’:

redacted: s47F - personal privacy imo

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.

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HPRM Record

Title

s47F - personal privacy

Diagnosis

FND

Key passages of outcome / recommendation

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.

  1. As XX’s plan has expired, a new plan incorporating provision of reasonable and necessary supports should be approved.

  2. 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.

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.

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.

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.

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

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s47F - personal privacy

FOI 23/24 – 1008

[Image not converted to Markdown – “ndis logo” – check the source PDF page for the actual content]

HPRM Record Title Key passages of outcome / recommendation
appropriately funded through mainstream services as set out under section 25(3).

FND | | This advice was about vehicle and home modifications. |

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. |

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. |

FND, psychosocial, non-organic paraplegia | | On the basis of information available, it cannot be considered that Peter meets the s24 or s25 criteria at this time.

Further information should be sought regarding the scope and outcomes of treatments undertaken to date, future interventions recommended, and the expected prognosis of Peter’s paralysis/conversion disorder/major depressive disorder/leukaemia. |

FND | | Access met.

On the basis of available information it is considered that that Chloe Wedding 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. |

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HPRM Record

Title : s47F - personal privacy

Key passages of outcome / recommendation

CFS

In regards to her condition of Chronic Fatigue Syndrome, XX does not meet $24 1b, 1c, le or any of the 825 criteria.

CES

XX does not meet Section 24 1(b), (c) and (e) and does not meet any of the early intervention criteria as outlined in Section 25.

ME/CFS, PoTS

Whilst it is satisfied that XX has a disability as a result of Postural Orthostatic Hypotension and

ME/Chronic Fatigue Syndrome it is not satisfied that this results in an impairment which is likely to be

permanent (24.1 b) and will require lifetime NDIS supports (24.1 e).

Access met.

Information indicates that she has a permanent and deteriorating physical impairment that results in substantially reduced functional capacity across the domains of mobility and self-care.

While it is considered that she will continue to require supports through the Health system, it is also likely that she will require supports within the scope of the NDIS for her lifetime

CFS, depression

Based on the evidence provided XX is ineligibility access the NDIS as she does not meet the Disability or Early intervention access criteria as outlined in Section 24 or 25 of the NDIA Act for her conditions of depression and CFS.

CES

Access met.

Based on the information provided Angela meets the NDIS disability access eligibility criteria and should me made eligible. access eligibility should be reviewed at each plan review, if not before.

CFS. Major depressive disorder, fibromyalgia, IBS

Based on the available evidence XX does not meet the following:

In relation to Chronic Fatigue: Does not meet $24 1c, 1e or 2 or $25 1b, 1ci, cii, ciii or 3a

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HPRM Record

HPRM Record Title Diagnosis Key passages of outcome / recommendation
In relation to Major Depression: Does not meet S24 1b, 1c, 1e, 2 or S25 1a, 1b, 1ci, cii, ciil 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 S24 or S25 criteria.

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Appendix C - Report on Complex regional pain syndrome

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

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Appendix D - Report on Chronic Fatigue Syndrome

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

Andrew “=” MD FRACP Professor of Medicine Consultant Infectious Diseases Phy Appointments: ond

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 @ 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 fatique 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 inthe USA‘.

nA 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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Appendix E - Report on Fibromyalgia

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

Technical Advisory Team - Operational Guidance

NDIA

Dear Ms East,

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 prepared after consideration of additional materials.

I 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 (Fitzcharies et al 2013). Its aetiology is therefore unknown. It is hypothesised 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).

  1. What is the impairment, if any?

You have advised that “impairment” has been interpreted in this 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