Research Request — Central Sensitivity Syndromes and Functional Neurological Disorder
Brief
Information to assist Assessors from NAWM with their decisions for access requests relating to these specific conditions.
Date
Due 24 December 2019
Requester
Katrin — Assistant Director TAT
Researcher
Aanika
Cleared by
Contents
Scope of this document … 4 Previous AAT Cases … 4 Previous TAT advice … 4 Central sensitivity syndromes / Central regional pain syndromes – Common co-morbidities … 5 Chronic Regional Pain Syndrome (CRPS) … 9 Expert report … 9 Summary of CRPS … 10 Section 24 Disability Requirement Considerations … 10 What are the common evidence-based clinical, medical and other treatments for CRPS? … 10 When is CRPS permanent or likely to be permanent for the disability requirements? Does this condition ever improve? … 11 What type of medical treatment and review is required to determine permanency? … 12 What are the typical functional impairments associated with CRPS? … 13 Is someone with CRPS likely to require supports from the NDIS for their lifetime? … 13 Section 25 Early Intervention Considerations … 14 How do early intervention access considerations apply to people with CRPS? … 14 Chronic Fatigue Syndrome (CFS) … 15 Summary of CFS … 15 RACGP Clinical Guidelines - CFS … 16 Section 24 Disability Requirement Considerations … 17 What are the common evidence-based clinical, medical and other treatments for CFS? … 17
FOR INTERNAL TAT USE ONLY
ndis
When is CFS permanent or likely to be permanent for the disability requirements? Does this condition ever improve?
What type of medical treatment and review is required to determine permanency?
What are the typical functional impairments associated with CFS?
Is someone with CFS likely to require supports from the NDIS for their lifetime?
Section 25 Early Intervention Considerations
How do early intervention access considerations apply to people with CFS?
Fibromyalgia
Expert report
Summary of Fibromyalgia
Section 24 Disability Requirement Considerations
What are the common evidence-based clinical, medical and other treatments for Fibromyalgia?
When is Fibromyalgia permanent or likely to be permanent for the disability requirements? Does this condition ever improve?
What type of medical treatment and review is required to determine permanency?
What are the typical functional impairments associated with Fibromyalgia?
Is someone with Fibromyalgia likely to require supports from the NDIS for their lifetime?
Section 25 Early Intervention Considerations
How do early intervention access considerations apply to people with Fibromyalgia?
Functional Neurological Disorder (FND) aka Conversion Disorder
Summary of FND
Section 24 Disability Requirement Considerations
What are the common evidence-based clinical, medical and other treatments for FND?
When is FND permanent or likely to be permanent for the disability requirements? Does this condition ever improve?
What type of medical treatment and review is required to determine permanency?
What are the typical functional impairments associated with FND?
Is someone with FND likely to require supports from the NDIS for their lifetime?
Section 25 Early Intervention Considerations
How do early intervention access considerations apply to people with FND?
Next steps
Reference List
Appendix A — AAT Case Summary
Appendix B — Previous TAT advice
Appendix C - Report on Complex Regional Pain Syndrome
Appendix D - Report on Chronic Fatigue Syndrome
Appendix E - Report on Fibromyalgia
Research Request – Central Sensitivity Syndromes and Functional Neurological Disorder Page 2 of 45
FOR INTERNAL TAT USE ONLY
Please note:
The research and literature reviews collated by our TAT Research Team are not to be shared external to the Branch. These are for internal TAT use only and are intended to assist our advisors with their reasonable and necessary decision making. Delegates have access to a wide variety of comprehensive guidance material. If Delegates require further information on access or planning matters they are to call the TAPS line for advice. There are already a significant number of resources, including commissioned expert reports and external specialist publications and clinical guidelines, which are available to NDIA staff to use in delegate decision making. This paper aims to bring these resources together as a starting point and provide any additional information as required.
Research Request — Central Sensitivity Syndromes and Functional Neurological Disorder Page 3 of 45 Page 72 of 335
Scope of this document
The National Access and Workload Management Branch (NAWM) have requested assistance from TAT with assessing access for prospective participants with Chronic Regional Pain Syndrome, Functional Neurological Disorder aka Conversion Disorder, Chronic Fatigue Syndrome & Fibromyalgia.
Note: While the Disability Related Health Supports (DRHS) policy has not changed any of the established NDIS access criteria or legislation, the fact that 1) Participants can now receive DRHS through the NDIS and 2) A planner must now plan for the ‘whole of person’, means that the ‘most appropriate funder/provider’ proviso (under s34.1.f) no longer eliminates the typical types of supports that the NDIS could potentially fund for this cohort.
This is causing an increase in access requests being made for these health conditions, based on their diagnosis and lived/reported significant functional impairment(s)
The symptoms and experiences of people with these health conditions are individual and often complex, consequently it is often challenging for medical experts to determine a diagnoses.
Even once a diagnosis has been made, it remains difficult for NDIS access assessors to apply the Access - disability requirements criteria, particularly to determine permanency and the need for NDIS supports for life, compared to mainstream health treatment and supports.
Also, as the pathophysiology [the disordered physiological processes associated with disease or injury] of these conditions are still poorly understood, it is challenging for access assessors to determine whether these cohorts have exhausted all evidence-based, clinical, medical or other treatments.
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None of these conditions are included on the List A, B, C or D for common conditions that meet NDIS Access – disability requirements.
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While the outcomes of AAT hearings are not intended to set a precedent, the NDIA legal team’s application of the access legislation against these health conditions in AAT cases is the only direction the NAWM have to guide their decision making.
Previous AAT Cases
The majority of these AAT cases were relating to access and were deemed ‘access not met’. Generally, it was only in severe cases that access was met, where permanency and functional impairment were established through expert reports.
See APPENDIX A for full summary of AAT cases relating to these conditions to date.
Previous TAT advices
There are several previous TAT access advices relating to these health conditions. Most of these advices are from 2017 & 2018.
These TAT advices highlight that CRPS, CFS, FND, fibromyalgia, along with Postural tachycardia syndrome (PoTS), depression, anxiety and other psychosocial disability, Lyme’s disease & lupus often present as complex comorbidities.
See APPENDIX B for full summary of TAT advices relating to these conditions.
Page 73 of 335
Central sensitivity syndromes / Central regional pain syndromes – Common co-morbidities
Physicians often experience difficulty diagnosing patients who present with reported chronic pain and multiple other non-specific symptoms. This is because reported and observed symptoms may result in multiple diagnoses.
The nomenclature of ‘central regional pain syndrome’ or ‘central sensitivity syndrome’, or their variations, are increasingly used to collectively refer to all chronic pain disorders with a common pathophysiology.
An advocacy website called Central Sensitivity Syndrome Survivor’s Guide comprehensively summarises this
“Central Sensitivity Syndrome or Central Sensitization Syndrome (CSS) is a comorbid syndrome marked by ‘central sensitization’ in which holds overlapping features that can cause significant disability. Such over-lapping conditions are Fibromyalgia, Myofascial Pain, and Chronic Fatigue Syndrome. The biophysiologic mechanisms of these conditions are multifactorial; neuroendocrine abnormalities with central sensitization, however, seem most important. Though psychological distress is present in these patients, keep in mind this is not a psychiatric illness. Management is mostly supportive and includes patient education, psychological support, behavioral modification, physical exercise, and various serotonergic and noradrenergic medications. Like Chronic Fatigue Syndrome and Fibromyalgia, there is a higher preponderance of females with this condition than men. Accumulated recent data support the hypothesis that all these disorders share a common biophysiologic mechanism of neurohormonal dysregulation caused by perhaps neuroendocrine or adrenaline. It seems the most important neurologic aberrations comprise central sensitization, which involve molecular, chemical, and functional changes in the central nervous system, resulting in an amplification and spread of pain, and intensification of other sensations”.
“The concept that several of these related conditions should be grouped under the unified heading of ‘Central Sensitivity Syndrome’ was first presented by Dr. Muhammad Yunus, rheumatologist, professor of Medicine at the University of Illinois College of Medicine at Peoria, and pioneer in fibromyalgia research. Dr. Yunus discovered that many of these conditions (e.g., fibromyalgia, myofascial pain syndrome, irritable bowel syndrome, chronic fatigue syndrome, headaches and restless legs syndrome) shared several characteristics, including pain, poor sleep, fatigue, extreme sensitivity to stimuli, and an absence of abnormal tissue structure. The connecting thread for these conditions appears to be central sensitization, which simply means that the central nervous system has an exaggerated response to stimuli”.
Dr Muhammad B. Yunas’s critical literature review from 2007 titled ‘Fibromyalgia and Overlapping Disorders: The Unifying Concept of Central Sensitivity Syndromes’ can be found here.
In 2007 Yunas concluded that the concept of CSS seems viable and it “based on mutual associations among the CSS conditions as well as the evidence for central sensitizations among several CSS members… [and that] CSS is an important new concept that embraces the biopsychosocial model of disease. Further critical studies are warranted to fully test this concept. However, it seems to have important significance for new directions for research and patient are involving physician and patient education. Each patent, irrespective of diagnosis, should be treated as an individual
- CSS Survivor’s Guide, “Central Sensitivity Syndrome (CSS) - Central Sensitization”, [website], 2019, http://css.dewarlorx.com, (accessed 18 December 2019)
Research Request — Central Sensitivity Syndromes and Functional Neurological Disorder Page 5 of 45 Page 74 of 335
Research on Central Sensitivity Syndromes (CSS)
Introduction to CSS Family
The proposed members of the CSS family include: Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome (IBS), Tension type headache (T-T Headache), Migraine, Temperomanibular disorders (TMD), Myofascial pain syndrome (MPS), regional soft-tissue pain syndrome (RSTPS), periodic limb movements in sleep (PLMS) multiple chemical sensitivity (MCS), Female urethral syndrome (FUS), Interstitial cystitis (IC), Post traumatic stress disorder (PTSD).
This publication has comprehensive information on the mutual associations amongst these CSS conditions.
Research Publications and Central Sensitization
A research publication from 2011 highlights how fibromyalgia is commonly linked with other regional pain syndromes such as tempromandibular disorder (TMD), irritable bowel syndrome (IBS), interstitial cystitis (IC), headache, chronic low back pain, and chronic neck pain.
This publication states that:
A persuasive body of evidence now demonstrates that sensitization represents a unifying pathophysiological mechanism among these painful disorders. It has been proposed that these syndromes have more in common than previously thought, specifically that they are characterized by a dysregulation of peripheral afferents and central nervous system pathways. Given the shared pathophysiological mechanisms, these disorders have been coined “central sensitivity syndromes” (CSS).
Another publication from 2015 discussed how central sensitization is a collective group of disorders stating that: There is considerable overlap among syndromes such as fibromyalgia, chronic fatigue, irritable bowel syndrome, chronic pelvic pain, and chronic daily headache.
Diagnoses, Self-diagnoses, and Symptoms Suggesting Central Sensitization Syndrome (CSS)
Abdominal bloating Abdominal pain, chronic abdominal pain Adrenal insufficiency (self-diagnosed), adrenal fatigue Alopecia, hair loss, trichotillomania Anxiety Atypical facial pain Atypical or non-cardiac chest pain Immune deficiency (self-diagnosed) Interstitial cystitis, painful bladder syndrome Irritable bowel syndrome Joint pains Low testosterone or hypogonadism (with normal test results) Lupus (self-diagnosed)
References
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Yunus, MB, ‘Fibromyalgia and Overlapping Disorders: The Unifying Concept of Central Sensitivity Syndromes’, The University of Illinois College, 2007, https://www.ourcpc.com/wp-content/uploads/2016/03/Yunus-central-sensitivity-2007.pdf, accessed 9 December 2019, p.339.
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Ibid, p. 341.
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L. Kindler et al.,
Research Request - Central Sensitivity Syndromes and Functional Neurological Disorder
Conditions Listed
| Autoimmune disorder (self-diagnosed) | Lyme disease, chronic Lyme disease (self-diagnosed) |
|---|---|
| Autonomic disorder (self-diagnosed) | Meniere disease |
| Black mold, toxic black mold (self-diagnosed) | Morgellons disease (self-diagnosed) |
| Brain fog, fibrofog | Multiple chemical sensitivities |
| Burning mouth syndrome | Multiple drug allergies or intolerances (self-diagnosed) |
| Burning tongue | Multiple food allergies or intolerances (self-diagnosed) |
| Candida or chronic yeast infection | Myofascial pain syndrome |
| Chiari malformation | Palpitations |
| Chronic low-back pain | Panic disorder, episodes, attacks |
| Chronic non-specific light-headedness | Pelvic pain, chronic pelvic pain, premenstrual syndrome |
| Chronic pain | Polycystic ovary syndrome |
| Chronic pelvic pain | Porphyria (self-diagnosed) |
| Chronic prostatitis | Post-deployment syndrome |
| Chronic tension or migraine headaches | Post-traumatic stress disorder |
| Chronic testicular or scrotal pain | Postural orthostatic tachycardia syndrome (POTS) |
| Chronic whiplash-associated disorders | Pseudotumor cerebri |
| Chronic widespread pain | Schamberg disease, soft tissue tumors |
| Complex regional pain syndrome | Sick building syndrome |
| Delusions of parasitosis | Sjögren syndrome (blamed for multiple symptoms) |
| Depression or bipolar disorder | Temporomandibular disorders, temporomandibular joint pain |
| Dizziness | Thyroid disease (with normal test results, usually self-diagnosed) |
| Edema or swelling complaints not evident on examination | Tinnitus |
| Ehlers—Danlos syndrome | Vulvodynia, vulvar vestibulitis |
| Fatigue or chronic fatigue |
Notes
While Functional Neurological Disorder (FND) is not considered under the Central Sensitivity Syndrome (CSS) umbrella of conditions, chronic pain is a common symptom of patients with FND and overlaps with these CSS conditions due to the neurological dysfunction factor.
The U.S. National Organization for Rare Disorders states that:
Anxiety and depression can sometimes cause physical symptoms which overlap with FND symptoms. For example, panic attacks can present with symptoms such as pins and needles
in the fingers or mouth and depression often causes poor concentration or fatigue. Anxiety
and depression are common in patients with FND but many patients do not have such problems.
Chronic pain is also common in patients with FND including fibromyalgia, which is also related to disturbed nervous system functioning. Pain disorders are also usually associated with fatigue, sleep disturbance, and poor concentration. Migraine and chronic headaches are also common.
Other functional disorders including irritable bowel syndrome, or overactive bladder syndrome are more common in patients with FND”’.
Similarly to FND, Chronic Fatigue Syndrome (CFS) does not fit neatly under the Central Sensitivity Syndrome umbrella, but is closely associated with many of the conditions and symptoms common in CSS patients and one aspect of the pathophysiology of CFS is an altered central nervous system conditioning®.
In 2002, the Royal Australasian College of Physicians (RACGP) published CFS Clinical Guidelines which state that:
- “Fatigue is a central feature of many clinical syndromes, including CFS, fibromyalgia, irritable bowel syndrome, major depression, anxiety and somatoform disorders. These syndromes also share other, non-specific symptoms, including musculoskeletal pain, sleep disturbance, neurocognitive impairment and mood changes. Fibromyalgia, in particular, is a closely related syndrome, differing mainly in its relative emphasis on musculoskeletal pain rather than fatigue”®.
7 NORD,