Fibromyalgia and Chronic Fatigue Syndrome

Millions of people suffer from illnesses that defy explanation. It is argued that such symptoms emerge as an expression of the overall suffering of existence, a suffering that was earlier carried by the Godhead. Western mankind is becoming aware of the gloomy existential condition in a cold and meaningless universe. The solution is to tone down worldly-oriented consciousness; to gear down and invoke spiritual meaning in modern guise.

Keywords: sacrifice, penance, suffering, crucifixion, disease, Amfortas wound, spiritual, existential stress.

Originally published as © Vasquez A. Microbial Origins of Fibromyalgia. Naturopathic Doctor News and Reviews 2016 Apr ndnr.com/pain-medicine/microbial-origins-of-fibromyalgia derived from Inflammation Mastery, 4th Edition excerpted as Pain Revolution (full-color) and Brain Inflammation (discounted grayscale printing). Copyright © 2014-present by Dr Alex Vasquez https://www.InflammationMastery.com/fibromyalgia 
See related video archive at https://www.inflammationmastery.com/fibromyalgia-migraine-videos-news

Fibromyalgia is a frequent disease, especially in women, and is recognised as a syndrome. Its effects can be very limiting, worsening your quality of life. In this paper, an adaptation of Priestley’s Analytical Music Therapy was applied through the symbolic use of improvised music in women with fibromyalgia with the aim of evaluating the subjective perception of relief or improvement of their symptoms. The study is based on 580 self-reports provided by 76 participants and obtained in 72 music therapy sessions carried out over six years and has a quasi-experimental research design with pretest-posttest measures and no control group. The perceived change experienced by the participants has been analysed in each of the dimensions of the Physical and Emotional Awareness Self-Assessment Wheel (CACFE) evaluation tool. The results showed that statistically significant changes occur when comparing the pre-post session reports: increase in concentration (68%), relaxation (65.5%), self-esteem (40.4%) and readiness (14.6%); and decrease in fatigue (51.9%) and pain perception (17.7%). In addition, an underlying structure of self-perceived change was found: through multidimensional scaling (MDS), two dimensions were found – intensity of change in relation to receptive techniques to access the unconscious, and driver of change through active techniques to explore the conscious mind and strengthen the self.

ME/CFS: Discrimination Within Social Institutions
Geoffrey Hallmann, Dr Rosanne Coutts, Dr Yvonne Hartmann
Southern Cross University

OBJECTIVES: To examine the nature and impact of discrimination experienced by persons with ME/CFS when engaged in interactions with social institutions.

METHOD: The initial phase of the research involved a thorough review of the available literature to establish the interaction of those with ME/CFS with social institutions. Social institutions are the complex social forms that are found within governments, family, universities, hospitals, incorporated entities, legal systems and other social structures and organisations. This paper focuses on the incidence, nature and effect of discriminatory behaviour that participants experience during interactions with social institutions.. In the data collection phase, a pilot study involving an investigation of the Australian perspective of the experience of ME/CFS was obtained. This was expanded in the main study and participants were provided the opportunity to reveal their stories. Participants were required to have a diagnosis of CFS, ME or ME/CFS from a medical practitioner and self-select themselves as compliant to the Fukuda CFS Criteria, Canadian ME/CFS Criteria and Ramsay ME Criteria. A background questionnaire was provided to give an insight into the history of the participant, particularly interactions with social institutions and pathways to diagnosis. The interview drew upon the questionnaire for guidance, with the primary questions derived from information gained from the literature review. The interviews were transcribed, coded and the relationships and issues identified in order to guide the second phase of the research which was conducted further into the study. The pilot study involved 3 participants, followed by a second, more comprehensive phase comprising 16 participants. Stories emerged from within those interviews with respect to interactions with society and these were broken down to reveal particular themes relevant to those experiences.

RESULTS: A total of 19 interviews were conducted. The average age of participants was 41.95 with all 14 females and 5 male participants. The mean duration of the condition was 17.66 years, with 8.35 years from onset until diagnosis. A number of issues arose, revealing an insight into the nature of the relationships that exist between persons with ME/CFS and various social institutions. Participants reported interactions that were both positive and negative. Such interactions were directly impacted by the diagnosis of ME/CFS. All participants had experienced some form of discrimination, with the majority being negative discrimination. Within these experiences, issues such as knowledge and understanding of the condition played a significant role in the discriminatory interaction. Misconceptions about the condition played a primary role. Abuse (verbal, physical and mental), withholding or withdrawal of goods and services, individual avoidance, social isolation, adverse employment decision, prescription of no or inappropriate treatment and the like were levelled against participants throughout their experiences. The ability to take action against discrimination was limited because of the effects of the condition and/or a lack of knowledge or desire to go about it.

CONCLUSION: Participants with ME/CFS who engaged with social institutions were subject to various factors (such as abuse, attitudes, behaviours, comments, misinformation, misunderstandings, beliefs and policies) that directly or indirectly arise because of their diagnosis and the contested nature of the condition. These factors play an important role in the form of discrimination that participants experienced across all social institutions. Positive discrimination was provided in the form of assistance, management, attitudes, comments and accommodations. Participants revealed circumstances in which discrimination was negative, including the refusal of assistance or accommodation, derogatory comments, malicious treatment and behaviours, inappropriate physical environments (due to noise, smells, access, furniture, line ups, public transport, etc.), inappropriate policies or procedures (eg onerous requirements, poor time frames, inability to be accessed remotely) or misinformed statements, treatment that was adverse (ie insufficient, inappropriate, adverse, deficient or damaging, and resulted consequences that were harmful to the physical, emotional or other interests of the participant). Of significance was the incidence of bullying behaviour that was associated with discrimination. Those with more visible symptoms and presentation of ME/CFS (ie wheelchair and bed bound) received greater assistance at times, while those with more invisible symptoms and presentation found access to assistance a more difficult and at times impossible task. Negative experiences had an adverse impact upon the person’s condition as well as their emotional wellbeing On occasions the impact and effect was sufficient to constitute trauma. The ability to respond to discriminatory practices was limited by knowledge of process and procedure, the health constrictions that impact the ability to take action, the availability of advocates to assist in such action, and the knowledge of the condition of those taking the action or making decisions. On no occasion was a participant able to follow through on a formal anti-discrimination complaint.

Significant functional impairment and psychological distress have been observed in adolescent patients with postural orthostatic tachycardia syndrome (POTS). Interdisciplinary rehabilitation programs have been shown to be beneficial in the treatment of chronic pain in adults and adolescents. Only preliminary data have examined interdisciplinary rehabilitation efforts in patients with POTS. This study evaluated the impact of an interdisciplinary rehabilitation program on the functional impairment and psychological distress in 33 adolescents diagnosed with POTS. Patients included in the study were adolescents ages 11 to 18 diagnosed with POTS. Measures completed at admission and discharge from the program included the Functional Disability Index, Center for Epidemiological Studies-Depression-Child scale, and the Pain Catastrophizing Scale for Children. After participation in the 3-week program, adolescents with POTS demonstrated a significant increase in overall functional ability and...

The efficiency and efficacy of guided self-instruction for chronic fatigue syndrome (CFS) can be enhanced if it is known which patients will benefit from the intervention. This study aimed to identify moderators of treatment response. Methods: This study is a secondary analysis of two randomized controlled trials evaluating the efficacy of guided self-instruction for CFS. A sample of 261 patients fulfilling US Center for Disease Control and Prevention criteria for CFS was randomly allocated to guided self-instruction or a wait list. The following potential treatment moderators were selected from the literature: age, fatigue severity, level of physical functioning, pain, level of depressive symptoms, self-efficacy with respect to fatigue, somatic attributions, avoidance of activity, and focus on bodily symptoms. Logistic and linear regression analyses were used with interaction term between treatment response and the potential moderator. Results: Age, level of depression, and avoidance of activity moderated the response to guided self-instruction. Patients who were young, had low levels of depressive symptoms, and who had a low tendency to avoid activity benefited more from the intervention than older patients and patients with high levels of depressive symptoms and a strong tendency to avoid activity. Conclusion: Guided self-instruction is exclusively aimed at cognitions and behaviours that perpetuate fatigue. Patients with severe depressive symptom may need more specific interventions aimed at the reduction of depressive symptoms to profit from the intervention. Therefore we suggest that patients with substantial depressive symptoms be directly referred to regular cognitive behaviour therapy.

To discuss the current terminologies used for fibromyalgia syndrome (FMS) and related overlapping conditions, to examine if central sensitivity syndromes (CSS) is the appropriate nosology for these disorders, and to explore the issue of disease versus illness. Methods: A literature search was performed through PubMed, Web of Science, and ScienceDirect using a number of keywords, eg, functional somatic syndromes, somatoform disorders, medically unexplained symptoms, organic and nonorganic, and diseases and illness. Relevant articles were then reviewed and representative ones cited. Results: Terminologies currently used for CSS conditions predominantly represent a psychosocial construct and are inappropriate. On the other hand, CSS seems to be the logical nosology based on a biopsychosocial model. Such terms as "medically unexplained symptoms," "somatization," "somatization disorder," and "functional somatic syndromes" in the context of CSS should be abandoned. Given current scientific knowledge, the concept of disease-illness dualism has no rational basis and impedes proper patient-physician communication, resulting in poor patient care. The concept of CSS is likely to promote research, education, and proper patient management. Conclusion: CSS seems to be a useful paradigm and an appropriate terminology for FMS and related conditions. The disease-illness, as well as organic/non-organic dichotomy, should be rejected.

There is now evidence that chronic fatigue syndrome (CFS) is accompanied by immune disorders and by increased oxidative stress. The present study has been designed in order to examine the serum concentrations of IgA and IgM to LPS of gram-negative enterobacteria, i.e. Hafnia alvei; Pseudomonas aeruginosa, Morganella morganii, Proteus mirabilis, Pseudomonas putida, Citrobacter koseri, and Klebsiella pneumoniae in CFS patients, patients with partial CFS and normal controls.

To investigate whether the duration of chronic pain in temporomandibular disorder (TMD) patients is associated with a net depletion of amino acids, and a distinct process from pain intensity. Methods: Twenty-nine patients defined by the research diagnostic criteria/TMD as having Type 1a muscle pain (TMD1A group), and 34 age-and sex-matched control subjects, were assessed for variation in urinary organic and amino acid excretion by gas chromatography-mass spectrometry. Results: The TMD1A patients' mean pain intensity, assessed on a visual analog scale (VAS), was 5.4 (95% confidence limits: 4.5 to 6.3), TMD1A illness duration was 5.0 ± 1.2 (SD) years, number of body areas with pain/subject was 6.3 ± 2.4 (range 0 to 10), and symptom prevalence from the Symptom Check List-90-Revised (SCL-90-R) was 25.5 ± 11.3 symptoms/subject, which was higher than the controls (5.2 ± 5.0 symptoms/subject, P Ͻ .001). TMD1A patient illness duration was positively correlated with symptom prevalence and body pain distribution, and all were independent of pain intensity. The TMD1A patients had: (1) an increased tyrosine:leucine ratio; and (2) reduced leucine concentrations (both P Ͻ .001), which suggests deregulated catabolism. Pain intensity was associated with: (1) changes in the multivariate urinary metabolite excretion patterns (P Ͻ .001); (2) reduced leucine concentrations (P Ͻ .001); and (3) increases in total urinary metabolites (P Ͻ .04), and in 2 unidentified molecules, UM28 (P Ͻ .001) and CFSUM1 (P Ͻ .002). TMD1A illness duration was associated with lower (1) urinary metabolite concentrations and (2) succinic acid and combined glutamine + glutamic acid levels, suggesting a progressive depletion of metabolite reserves. Conclusion: In TMD1A patients, total amino acid excretion was positively correlated with pain intensity and negatively correlated with illness duration, which indicated that illness duration was associated with a different set of metabolic anomalies compared with those identified for pain intensity.

Objective: The Chalder Fatigue Scale (CFQ) is a widely used instrument to assess fatigue in both clinical and nonclinical settings. Psychometric properties of the scale and discriminative abilities were examined. Methods: A total of 361 patients with CFS and 1615 individuals in the community were assessed with the CFQ. Principal component analysis (PCA) was used to explore the structure of the scale. Receiver-operating characteristic curve (ROC) was used to investigate the discriminative properties.

Trans-diagnostic approaches suggest that key cognitive and behavioural processes maintain symptoms across a wide range of mental health disorders. Fatigue is a common clinical feature of attention deficit hyperactivity disorder (ADHD) in adulthood; however, empirical data supporting its prevalence are lacking. This study aimed to collate outcomes from outpatient services to (1) investigate the prevalence of fatigue in adults with ADHD, (2) examine symptoms of ADHD in adults with chronic fatigue syndrome (CFS), and (3) consider secondary clinical characteristics common to both disorder groups. Measures of self-reported fatigue were compared across groups of adults with ADHD (N = 243), CFS (N = 86), and healthy controls (HC) (N = 211) using a between-subjects cross-sectional design. Groups were also compared on secondary clinical measures of functional impairment, mood, anxiety, sleep, self-efficacy, and their beliefs about the acceptability of expressing emotions. The ADHD group were...

Objectives: To evaluate the cardiovascular response to postural challenge in patients with chronic fatigue syndrome (CFS) and to determine whether the degree of instability of the cardiovascular response may aid in diagnosing CFS. Methods: Patients with CFS (n = 25) and their age- and gender-matched healthy controls (n = 37), patients with fibromyalgia (n = 30), generalized anxiety disorder (n = 15), and essential hypertension (n = 20) were evaluated with the aid of a standardized tilt test. The blood pressure (BP) and heart rate (HR) were recorded during 10 minutes of recumbence and 30 minutes of head-up tilt. We designated BP changes as the differences between successive BP values and the last recumbent BP. The average and standard deviation (SD) were calculated. Time curves of BP differences were loaded into a computerized image analyzer, and their outline ratios and fractal dimensions were measured. HR changes were determined similarly. The average and SD of the parameters were calculated, and intergroup comparisons were performed. Results: On multivariate analysis, the independent predictors of CFS patients versus healthy controls were the fractal dimension of absolute values of the systolic BP changes (SYST-FD.abs), the standard deviation of the current values of the systolic BP changes (SYST-SD.cur), and the standard deviation of the current values of the heart rate changes (HR-SD.cur). The following equation was deduced to calculate the hemodynamic instability score (HIS) in the individual patient: HIS = 64.3303 + (SYST-FD.abs [times ] [minus ]68.0135) + (SYST-SD.cur [times ] 111.3726) + (HR-SD.cur [times ] 60.4164). The best cutoff differentiating CFS from the healthy controls was [minus ]0.98. HIS values [gt ][minus ]0.98 were associated with CFS (sensitivity 97%, specificity 97%). The HIS differed significantly between CFS and other groups (P [lt ] .0001) except for generalized anxiety disorder. Group averages (SD) of HIS were CFS = +3.72 (5.02), healthy = [minus ]4.62 (2.26), fibromyalgia = [minus ]3.27 (2.63), hypertension = [minus ]5.53 (2.24), and generalized anxiety disorder = +1.08 (5.2). Conclusion: The HIS adds objective criteria confirming the diagnosis of CFS.

Objectives:
MTHFR defects are known to include a large portion of the healthy human population. The aim of this study is to determine if the incidence of MTHFR defect in the CFS/FMS population is different than the general population, and if specific intervention to treat such defects improves outcomes over standard integrative naturopathic therapy this population.
Design:
Active comparator trial
Measures:
Laboratory analysis of 88 previously diagnosed CFS/FMS patients as compared to population matched controls.
Results:
Incidence of the medically correlated gene variants for MTHFR (C677T and A1298C) in the total population are estimated to be between 36 – 49 % for heterozygotes, 10-12% for homozygotes and 10-20% for compound heterozygotes [1,2,4]. While Harmon DL, et.al. [3] originally published no correlation between CFS and a higher incidence in MTHFR variation in 1997 our clinical experience seemed to point to a different correlation. We selected 88 patients with a prior diagnosis of FMS or CFS (based on commonly accepted diagnostic criteria) and tested them for the C677T and A1298C gene variants. We then treated them in a manner consistent with an active comparator trial based on their MTHFR status and compared their therapeutic outcomes after the addition of MTHFR specific therapy to the standard integrative naturopathic therapy they had been receiving.
Conclusions:
MTHFR incidence in the CFS/FMS patient was significantly higher than general population averages with a different distribution of gene defect patterns. The addition of MTHFR specific therapy based on lab findings yielded a significant improvement in outcome as compared to the standard integrative naturopathic therapy in an active comparator trial. These data underscore the importance of proper diagnosis and management of the MTHFR defect group in the CFS/FMS patient population.

Widespread pain is noted in many patients with Chronic Fatigue Syndrome (MECFS), Fibromyalgia (FM) and Temporomandibular disorders (TMD). These conditions usually start as a localized condition and spread to a widespread pain condition with increasing illness duration. The aim was to assess the changes in biochemistry associated with pain expression and alterations in renal function.Forty-seven MECFS patients and age/sex matched controls had: a clinical examination, completed questionnaires, standard serum biochemistry, glucose tolerance tests and serum and urine metabolomes in an observational study. Increases in pain distribution were associated with reductions in serum essential amino acids, urea, serum sodium and increases in serum glucose and the 24-hour urine volume however the biochemistry was different for each pain area. Regression modelling revealed potential acetylation and methylation defects in the pain subjects. These findings confirm and extend our earlier findings. These changes appear consistent with repeated minor inflammatory mediated alterations in kidney function resulting in essential amino acid deprivation and inhibition of protein synthesis and genetic translation within tissues.

Fibromyalgia (FM) is a debilitating, widespread pain disorder that is assumed
to originate from inappropriate pain processing in the central nervous system.
Psychological and behavioral factors are both believed to underlie the pathogenesis
and complicate the treatment. This hypothesis, however, has not yet been
sufficiently supported by scientific evidence and accumulating evidence supports a
peripheral neurological origin of the symptoms.
We postulate that FM and several unexplained widespread pain syndromes
are caused by chronic postural idiopathic cerebrospinal hypertension. Thus, the
symptoms originate from the filling of nerve root sleeves under high pressure with
subsequent polyradiculopathy from the compression of the nerve root fibers (axons)
inside the sleeves. Associated symptoms, such as bladder and bowel dysfunction,
result from compression of the sacral nerve root fibers, and facial pain and
paresthesia result from compression of the cranial nerve root fibers. Idiopathic
Intracranial Hypertension, Normal Pressure Hydrocephalus and the clinical entity of
symptomatic Tarlov cysts share similar central and peripheral neurological
symptoms and are likely other manifestations of the same condition.
The hypothesis presented in this article links the characteristics of
fibromyalgia and unexplained widespread pain to cerebrospinal pressure
dysregulation with support from scientific evidence and provides a conclusive
explanation for the multitude of symptoms associated with fibromyalgia.

Objective: Our objective was to review and compare, with meta-analytic methods, observational studies on the association of medically unexplained physical symptoms, anxiety, and depression with special emphasis on healthy and organically ill control groups and on different types of symptoms, measures, and illness behavior. Methods: A search of MEDLINE and PsycLIT/ PsycINFO for abstracts from 1980 to April 2001 was performed; principal investigators in the field were contacted and article reference lists were used to retrieve additional relevant articles. Two hundred forty-four studies were included on the basis of consensus ratings if they fulfilled seven of eight inclusion criteria pertaining to diagnostic accuracy and statistical appropriateness. Five hundred twenty-two studies were deferred or excluded. We focused specifically on the four functional somatic syndromes for which there were sufficient numbers for meta-analytic integration: irritable bowel syndrome (IBS), nonulcer dyspepsia (NUD), fibromyalgia (FM), and chronic fatigue syndrome (CFS). Data were extracted independently by two authors according to a prespecified coding manual with up to 70 parameters per study. Results: Effect sizes for the association of the four functional somatic syndromes with depression and anxiety were of moderate magnitude but were highly significant statistically when compared with healthy persons and controls with medical disorders of known organic pathology. Moreover, this association was significant whether depression was measured with or without somatic items. Chronic fatigue syndrome is characterized by higher scores of depression, fibromyalgia by lower scores of anxiety than irritable bowel syndrome. Consulting behavior and severity of somatization is related to higher levels of anxiety and depression. Conclusions: Meta-analytic integration confirms that the four functional somatic syndromes (IBS, NUD, FM, CFS) are related to (but not fully dependent on) depression and anxiety. At present, there is only limited meta-analytic evidence for the same sort of association for medically unexplained physical symptoms in general. In view of the relative independence from depression and anxiety, classification and treatment of these symptoms and syndromes as "common mental disorders" does not seem fully appropriate.

Purpose: Idiopathic intracranial hypertension (IICH) is a condition characterized by raised intracranial pressure (ICP), and its diagnosis is established when the opening pressure measured during a lumbar puncture is elevated >20 cm H2O in nonobese patients or >25 cm H2O in obese patients. Papilledema is caused by forced filling of the optic nerve sheath with cerebrospinal fluid (CSF). Other common but underappreciated symptoms of IICH are neck pain, back pain, and radicular pain in the arms and legs resulting from associated increased spinal pressure and forced filling of the spinal nerves with CSF. Widespread pain and also several other characteristics of IICH share notable similarities with characteristics of fibromyalgia (FM) and chronic fatigue syndrome (CFS), two overlapping chronic pain conditions. The aim of this review was to compare literature data regarding the characteristics of IICH, FM, and CFS and to link the shared data to an apparent underlying physiopathology, that is, increased ICP.
Methods: Data in the literature regarding these three conditions were compared and linked to the hypothesis of the shared underlying physiopathology of increased cerebrospinal pressure.
Results: The shared characteristics of IICH, FM, and CFS that can be caused by increased ICP include headaches, fatigue, cognitive impairment, loss of gray matter, involvement of cranial nerves, and overload of the lymphatic olfactory pathway. Increased pressure in the spinal canal and in peripheral nerve root sheaths causes widespread pain, weakness in the arms and legs, walking difficulties (ataxia), and bladder, bowel, and sphincter symptoms. Additionally, IICH, FM, and CFS are frequently associated with sympathetic overactivity symptoms and obesity. These conditions share a strong female predominance and are frequently associated with Ehlers-Danlos syndrome.
Conclusion: IICH, FM, and CFS share a large variety of symptoms that might all be explained by the same pathophysiology of increased cerebrospinal pressure.

Mitochondrial disorders were once relegated to "orphan" status as topics for small paragraphs in pathology textbooks and the hospital-based practices of subspecialists. With the increasing appreciation of the high frequency and ease of treatment of mitochondrial dysfunction, this common cause and consequence of many conditions seen in both primary and specialty care deserves the attention of all practicing clinicians.

Patients with chronic fatigue syndrome (CFS) experience chronic musculoskeletal pain which is even more debilitating than fatigue. Scientific research data gathered around the world enables clinicians to understand, at least in part, chronic musculoskeletal pain in CFS patients. Generalized joint hypermobility and benign joint hypermobility syndrome appear to be highly prevalent among CFS sufferers, but they do not seem to be of any clinical importance. On the other hand, pain catastrophizing accounts for a substantial portion of musculoskeletal pain and is a predictor of exercise performance in CFS patients. The evidence concerning pain catastrophizing is supportive of the indirect evidence of a dysfunctional pain processing system in CFS patients with musculoskeletal pain. CFS sufferers respond to incremental exercise with a lengthened and accentuated oxidative stress response, explaining muscle pain, postexertional malaise, and the decrease in pain threshold following graded exercise in CFS patients. Applying the scientific evidence to the manual physiotherapy profession, pacing self-management techniques and pain neurophysiology education are indicated for the treatment of musculoskeletal pain in CFS patients. Studies examining the effectiveness of these strategies for CFS patients are warranted.

Background: Disability is a defining feature of chronic conditions, and it is an increasingly used measure of therapy effectiveness. The Work and Social Adjustment Scale (WSAS) is a simple and clear measure of disability. Although the scale is widely used, no study has yet investigated its psychometric properties in patients with chronic fatigue syndrome (CFS). Methods: Data from two samples of patients were used, one from a multicenter randomized controlled clinical trial of treatments for CFS (n =639) and the other from a clinic that specializes in CFS (n=384). All patients completed the WSAS as well as other measures. Results: Internal consistency and the Spearman-Brown split-half coefficient values indicated that the scale is reliable. CFS patients who had comorbid diagnoses of depression, anxiety or fibromyalgia had higher WSAS scores. High levels of disability were associated with high number of physical symptoms, severe fatigue, depression, anxiety, poor sleep quality and poor physical fitness, with correlation coefficients ranging between 0.41 and 0.11. Lower scores on the WSAS were modestly associated with better physical functioning as well as higher levels of physical capacity as assessed by a walking test. Sensitivity to change was evaluated in a subgroup of patients who had undergone a course of cognitive behavioral therapy. Disability significantly decreased after therapy and remained stable at follow-ups. Conclusion: The WSAS is a reliable and valid assessment tool for disability in patients with CFS.

LEGAL PERSPECTIVES ON MYALGIC ENCEPHALOMYELITIS/
CHRONIC FATIGUE SYNDROME (ME/CFS)

Geoffrey Hallmann
B.Bus.(Hons)(UNE-NR), LLB(Hons)(Newcastle), Dip Leg Prac (Newcastle), Dip Fin Plan (Deakin)

Praxis, Southern Cross University, 15 February 2008

School of Exercise Science and Sport Management
Southern Cross University, Lismore NSW 2480, Australia
Corresponding Email: [email protected]

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a composite term for a complex and controversial illness with no accepted pathogenesis, although its aetiology has suggested factors such including immunological, genetic, viral, psychological and neuroendocrinological factors.  The condition affects between 0.2% and 0.7% of the population (and more recent data suggesting up to 2.54%), with women being more affected than men.

Whilst much research exists (particularly internationally) in respect of the effect of ME/CFS on sufferers from a financial, sociological or quality of life perspective there is dearth of research with respect to the legal perspective and the social experience in Australia.

Objectives: This research seeks to reach beyond the existing research into ME/CFS to understand the interaction of sufferers with both private and public institutions, as well as the social interactions that occur on a daily basis. 

A specific focus will be given to identifying and understanding issues that can lead to a legal recourse can include such as insurance, superannuation, medical treatment, industrial relations, personal relationships, discrimination, bankruptcy or social security.  Whilst a legal recourse can arise, it may never be undertake because of the ability or desire of the sufferer to pursue the issue.  Moreover, the legal system itself may well present a financial barrier that prevents action coming to the fore.

Study Design: A literature search was conducted across a number of search engines, including Austlii, AGIS, Westlaw Australia, Proquest 5000, Lawbook Online, Informit, Lexis Nexis, Findlaw, PubMed, Medline, Metacrawler, Digital Theses, Factiva, Google, Google Scholar, Metacrawler, Dogpile and Yahoo.  Literature was sourced from published and unpublished research, support groups, advocates and journalistic sources.

The search criteria was broadened to include other names for the condition, including Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalopathy, Post Infectious Fatigue Syndrome (PIFS) and Post Viral Fatigue Syndrome (PVFS), Chronic Epstein Barr Syndrome and ‘Yuppie Flu’.  The literature was grouped in accordance with relevant topics and sub-topics and questions for the study were derived from issues identified within the literature – particularly legal perspectives.  The study will verify the data via triangulation, using quantitative and qualitative methodologies.
An initial pilot study will be conducted with three to five sufferers, utilising a phenomenonological/critical ethnographically informed investigation.  Interview questions will be put to the participants in a videoed format.  Such interviews will allow for the variable nature of the condition, with several sittings if required and/or Email submissions from participants to allow further data input where recall issues affect the responses provided.  The questionnaire will then be refined and utilised for the main data collection via the same process. 

Themes will be identified and a quantitative instrument produced.  The questionnaire will be distributed to approximately 250 participants via the various Australian ME/CFS societies and Co-Cure to obtain participants.  The results will be compared and contrasted with the qualitative data obtained and discussions undertaken.

Outcomes: The review of the literature has provided a social perspective of ME/CFS, but the focus tends towards the overseas experience.  Case law, research literature and advocacy commentary allude to legal aspects of the condition.  This research aims to draw out the Australian experience and in particular draw out any legal and social issues that may arise with the condition.

CFS/ME International Conference 2018
National Centre for Neuroimmunology and Emerging Diseases Crowne Plaza, Surfers Paradise, Qld
26-27 November 2018


Abstract Title: ME/CFS: NDIS and the Disability Hurdle
Authors: Geoffrey Hallmann
Background: B.Bus.(Hons), LLB (Hons). DipLegPrac, DipFinPlan; Chair of ME/CFS (Australia), Former PhD Candidate (Southern Cross University); Masters of Public Health Student (Griffith University)

Question: What is the position of the National Disability Insurance Scheme (‘NDIS’) with respect to claimants MyalgicEncephalomyelitis/Chronic Fatigue Syndrome (‘ME/CFS’)?

Methods: A literature review was conducted with respect to the background and purposes of the NDIS, with a specific emphasis upon ME/CFS. Direct feedback from the National Disability Insurance Agency (‘NDIA’) with respect to its policy and the foundation for it was obtained.  Publicly available grey literature was accessed to identify current issues affecting NDIS claimants with ME/CFS.

Results: The NDIA is currently assessing claims on the basis that ME/CFS is not a permanent condition.  The primary reason for the NDIA’s position is a misinterpretation of piece of 2006 research known colloquially as the Dubbo study and reliance upon long outdated guidelines.

Conclusions: The NDIA is does not presently have an established policy for claimants with ME/CFS, and the current view of permanency is flawed, hence people with ME/CFS are being turned away from the scheme.

Abstract Submission:
Established by the National Disability Insurance Scheme Act 2013, the NDIS was formally rolled out on a national basis on 1 July 2016.  The NDIS has not been without controversy,  A recent report by Flinders University identified that NDIS recipients were received around half of the assistance that they had received prior to the introduction of the scheme (Mavromaras, et al., 2018).  The scheme currently operates on a staffing cap, hence is heavily understaffed (Productivity Commission, 2017). 

The NDIS spends approximately $ 10 million a year defending matters involving claimants contesting the decisions of the NDIA.  Approximately 40% of appeals yield an improved outcome (Productivity Commission, 2017).  A review of the AAT caselaw reveals no cases have been decided with respect to ME/CFS presently.  There are a number of cases pending (ME/CFS Legal Resources, 2017).
The current anecdotal evidence identifies that ME/CFS applicants are not succeeding in their claims (Reilly & Buchanan, 2018; Emerge, 2018; Hutchinson, 2018; Ludlam, 2018).  ME/CFS is a debilitating condition.  For the majority, it is permanent (ME/CFS Legal Resources, 2017).

The NDIA deny the condition is permanent and are relying upon the 2006 Dubbo Infection Outcomes study (Hickie, et al., 2006) to assert that “many individuals recover without intervention over weeks or months, but approximately 10% will meet the criteria of ME/chronic fatigue syndrome at six months”.  The NDIA claim that “[o]f these, a small subset may go on to suffer from both severely disabling and prolonged (greater than 5 years) ME/chronic fatigue syndrome” (Faulkner, 2018).  The NDIA rely upon the 2002 Australian CFS guidelines (Loblay, et al., 2002) and the UK’s NICE guidelines (Turnbull, et al., 2007).  Cognitive Behavioural Therapy (CBT) and Graded Exercise therapy (GET) are considered the evidence based management of the condition – despite significant evidence to the contrary. 

Both guidelines are under review, with a particular focus upon the appropriateness of CBT and GET, both of which are of questionable value (Vink & Vink-Niese, 2018; Various Authors, 2017).

ME/CFS is not currently a “List B” condition, hence not presumed to be a disability.  The current stance is therefore making it near impossible for people with ME/CFS to succeed.  The NDIS require more contemporary insight into the condition to assist them to a more realistic view of ME/CFS claimants.

References:
Emerge. (2018, October). National Disability Insurance Scheme (NDIS). Retrieved October 12, 2018, from Emerge: emerge.org.au/support-services/financial-services/ndis
Faulkner, C. (2018, August 17). Personal Communication from NDIA.
Hickie, I., Davenport, T., Wakefield, D., Vollmer-Conna, U., Cameron, B., Vernon, S. D., . . . Lloyd, A. (2006). Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. British Medical Journal, 333(7568), 575. doi:http://doi.org/10.1136/bmj.38933.585764.AE
Hutchinson, S. (2018, April 10). OPINION: NDIS must recognise chronic fatigue syndrome or suicide will follow. Retrieved October 12, 2018, from The Feed: https://www.sbs.com.au/news/the-feed/opinion-ndis-must-recognise-chronic-fatigue-syndrome-or-suicide-will-follow
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Observations concerning the characteristics of patients who presented to a medical clinic with a principal complaint of chronic medically unexplained fatigue (Chronic Fatigue Syndrome or CFS) are described, including the cognitions (thoughts and assumptions) elicited from a sample of these patients who were treated using cognitive behavioural therapy. On the basis of these observations a cognitive theory of the aetiology of CFS is proposed. These observations have implications for the treatment of patients with CFS.

Fatigue is a subjective experience that affects everybody. In healthy individuals, it can be considered a physiological response to physical or psychological stress. In people with specific diseases, however, fatigue often represents one of the most significant problems. Fatigue can be caused by many factors, both intrinsic to the patient and extrinsic, such as therapeutic interventions. This review, based on published studies, has been conducted with the aim of presenting a critical discussion of the available information on the characteristics, causes and potential treatments of fatigue in cancer patients receiving chemotherapy. The incidence of fatigue in these patients, the methods for measuring and evaluating fatigue, and possible therapeutic options are discussed. An appraisal of the toxicity of various chemotherapeutic agents is also presented. Although fatigue is now an ever more considered aspect of the toxicity of chemotherapy, it remains difficult to establish what standard should be used to make a quali-quantitative evaluation of this symptom. Furthermore, in the absence of a clear demonstration of the efficacy of some therapies, the management of cancer-related fatigue remains poorly defined (except for the treatment of anemia-related fatigue). New randomized clinical trials are necessary to indicate the best strategies for tackling this important problem.

The article is a narrative review of the theoretical standing and empirical evidence for the cognitive behavioural model of medically unexplained symptoms (MUS) in general and for chronic fatigue syndrome (CFS) and irritable bowel syndrome (IBS) in particular. A literature search of Medline and Psychinfo from 1966 to the present day was conducted using MUS and related terms as search terms. All relevant articles were reviewed. The search was then limited in stages, by cognitive behavioural therapy (CBT), condition, treatment and type of trial. Evidence was found for genetic, neurological, psychophysiological, immunological, personality, attentional, attributional, affective, behavioural, social and inter-personal factors in the onset and maintenance of MUS. The evidence for the contribution of individual factors, and their autopoietic interaction in MUS (as hypothesised by the cognitive behavioural model) is examined. The evidence from the treatment trials of cognitive behavioural therapy for MUS, CFS and IBS is reviewed as an experimental test of the cognitive behavioural models. We conclude that a broadly conceptualized cognitive behavioural model of MUS suggests a novel and plausible mechanism of symptom generation and has heuristic value. We offer suggestions for further research.

In this report we present four patients who were found to have both an eating disorder and the chronic fatigue syndrome (CFS). Two of the patients presented for evaluation of an eating disorder and also had CFS, while two of the patients presented for evaluation of CFS and also had an eating disorder. In all four patients the eating disorder preceded the CFS. We consider the question of whether the occurrence of these two disorders in the same patients is merely a coincidence; whether an eating disorder can act as a precipitant for CFS, perhaps through the exacerbation of an underlying vascular instability; and whether overlapping etiologies may predispose some adolescents to develop both disorders. We also discuss similarities (including diagnostic dilemmas, cultural influences, psychological correlates, demographic similarities, perceptual biases, and cardiovascular effects) encountered in the management of both of these disorders.

The complexities of the chronic fatigue syndrome and the methodologic problems associated with its study indicate the need for a comprehensive, systematic, and integrated approach to the evaluation, classification, and study of persons with this condition and other fatiguing illnesses. We propose a conceptual framework and a set of guidelines that provide such an approach. Our guidelines include recommendations for the clinical evaluation of fatigued persons, a revised case definition of the chronic fatigue syndrome, and a strategy for subgrouping fatigued persons in formal investigations. Med. 1994;121:953-959.