Medically documenting disability in ME/CFS cases [US]

Posted on 07/03/2019 by wames

Medically Documenting Disability in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases, by Barbara Comerford and Richard Podell in Front. Pediatr. 7:231, 2 July 2019 [doi: 10.3389/fped.2019.00231]

 

Article introduction:

Patients with severe myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS) experience debilitating physical and cognitive symptoms, which often result in the need to file disability claims.

A significant number of ME/CFS patients are children or adolescents. ME/CFS patients often turn to physicians who are not trained to recognize and diagnose ME/CFS, and who might or might not understand that ME/CFS is a multi-system primarily physical illness. Such misperceptions can adversely affect the doctor-patient relationship, the clinical outcomes, as well as the results of disability claims

According to the National Academies of Science, Engineering and Medicine, “Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome… This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort. ME/CFS can severely impair patients’ ability to conduct their normal lives.1”  The prevalence of MECFS among children and adolescents has been estimated variously as between 0.11 and 4% (1).

A large percentage of children and adolescents with ME/CFS suffer from orthostatic intolerance due to one or both of these syndromes: Neurally Mediated Hypotension (NMH) and Postural Orthostatic Tachycardia Syndrome (POTS). These elements of ME/CFS often respond well to proper treatment (2, 3).

Conclusion:
The ME/CFS claimant must document the total adverse effect the constellation of symptoms has on his/her functional abilities and should provide that documentation in journal form to his treating physician during each visit. No claim can succeed without medical support and documentation of symptoms and functional limitations (physical and cognitive) by informed ME/CFS medical providers. The ME/CFS claimant medical record of functional limitations, and objective documentation of those limitations provided by the treating physician is crucial to support the ME/CFS disability claim.

If keeping a daily journal is not practical, we recommend that the patient or parent at each doctor visit submit 3 or 4 recent real life examples of episodes when the patient did “too much,” how the symptoms then flared and functional abilities declined, and how many hours or days were needed before symptoms and functional abilities regained their pre-exertional baselines.

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Mediating relatedness for adolescents with ME: reducing isolation through minimal interactions with a robot avatar

Posted on 07/02/2019 by wames

Mediating relatedness for adolescents with ME: Reducing isolation through minimal interactions with a robot avatar, by Alma Leora Culen, Jorun Borsting, William Odom in Proceedings of the 2019 on Designing Interactive Systems Conference, Pages 359-371

Abstract:

This paper discusses how a networked object in the form of a small robot designed to mediate experiences of care, social connectedness, and intimacy, was used by adolescents with Myalgic Encephalomyelitis, a condition that reduces their normal functioning, including the ability to socialize.

A study with nine adolescents, each using the robot for about a year in average, revealed that it was largely effective at mediating their everyday experiences of relatedness, triggering productive new habits and social practices.

We interpret these findings to propose a set of strategies for designing technologies that support relatedness while requiring minimal interactivity and engagement.

Balance, extension-of-self, coolness, and acts-of-care, in addition to commonly used physicalness, expressivity and awareness, enable the robot to extend the adolescents’ ability to relate to others, people and animals.

 

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Measurements of recovery & predictors of outcome in an untreated CFS sample

Posted on 07/01/2019 by wames

Measurements of recovery and predictors of outcome in an untreated Chronic Fatigue Syndrome Sample, by Marie Thomas, Andrew Smith in Journal of Health and Medical Sciences Vol 2, #2, pp 167-178 [Published online: April 22, 2019] doi:10.31014/aior.1994.02.02.33

 

Research abstract:

The current study examined a large cohort of untreated Chronic Fatigue Syndrome patients at initial assessment and at specific time points over a three-year period. Methods used in previous studies to assess patient health, were validated and used to assess recovery and improvement.

Possible predictors of outcome would then be identified by assessing improvements in health status at specific follow-up points. The illness was also assessed in terms of recovery and improvement by using health related and psychosocial measures together with the aetiology of the illness. These were further used to investigate possible mechanisms influencing or predicting recovery or improvement.

Two-hundred and twenty-six patients completed wide ranging questionnaires at initial
assessment and again six and eighteen months and three years later. A current state of health score was used to measure recovery over time and analyses conducted to investigate the relationship between this and other health related measures. Regression analyses were conducted to assess predictors of improvement and recovery.

Spontaneous recovery rates in the untreated patient at three-year follow-up were low (6%).  The data suggested, however, that illness length, symptom severity and health status have an important role in recovery. Although there was no evidence to suggest an association between illness onset type and subsequent recovery or psychopathology scores at initial assessment and recovery, regression analyses did indicate that levels of anxiety, cognitive difficulties and social support at initial assessment predict a positive outcome. The state of health measure was validated as a method of accurately assessed the health status of patients and was used as an indicator of improvement and recovery within this group.

Spontaneous recovery in the patient group was associated with several factors measured at initial assessment. However, further studies are necessary to more fully identify the factors which affect recovery or improvement and to investigate the exact nature of the mechanisms involved. The present study shows that spontaneous recovery of CFS
patients is rare. Treatment or management is essential, and the efficacy of different approaches must be assessed.

2.3.1 Measurement of Recovery

Health status and severity were measured by a ‘current state of health measure’ (Smith et al., 1996). This 5-item scale categorised the patient’s health as follows: (1) worse than at any stage of the illness; (2) bad; (3) bad with some recovery; (4) recovering with occasional relapses and (5) almost completely recovered. In order to test the validity of this measure to accurately describe health status at any given time, patients were categorised into two groups at baseline: those who were in poor health (scoring ‘worse than any stage’, ‘bad’ and ‘bad with some recovery’) and those who thought they were recovering (scoring ‘recovering with occasional relapse’ and ‘almost completely recovered’). These baseline data were then compared to measures known to be associated with the illness, including: (a) positive and negative mood (Zevon & Tellegen, 1982); (b) depression (Beck et al., 1961; Radloff, 1997); (c) anxiety (Spielberger et al., 1971); (d) fatigue related symptoms (Ray et al., 1993); (e) physical symptoms (Cohen & Hoberman, 1983; Smith et al., 1996); (f) cognitive failures (Broadbent et al., 1982) and, (g) stress (Cohen et al., 1983).

Conclusion:

Overall, the current longitudinal study has provided data indicating that prognosis for the untreated CFS patient is poor. Associations between the state of health measure and other physical and mental health variables have been verified using a large group of patients. The validation of a simple 5-item measure by other standardised measures leads us to believe that this score can be used to accurately rate patient illness severity. We have also shown that this measure can predict and assess recovery. Positive outcome measures are indicated in cases where illness length is short and when the number and severity of symptoms are low. We have confirmed the widely held belief among healthcare professionals that offering care to this patient group before the illness is allowed to become entrenched is of major importance if therapy is to be successful. The measures described here can now be used to evaluate the efficacy of treatments in future studies. Further research is necessary, however, to identify the, as yet, unidentified factors which can accurately predict positive outcome in this illness.

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Monitoring treatment harm in ME/CFS: a freedom-of-information study of NHS specialist centres in England.

Posted on 06/28/2019 by wames

Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England, by Graham McPhee, Adrian Baldwin, Tom Kindlon, Brian M Hughes in J Health Psychol. 2019 Jun 24. [Epub ahead of print] doi:10.1177/1359105319854532

 

Research abstract:

The use of graded exercise therapy and cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome has attracted considerable controversy.

This controversy relates not only to the disputed evidence for treatment efficacy but also to widespread reports from patients that graded exercise therapy, in particular, has caused them harm.

We surveyed the National Health Service–affiliated myalgic encephalomyelitis/ chronic fatigue syndrome specialist clinics in England to assess how harms following treatment are detected and to examine how patients are warned about the potential for harms.

We sent 57 clinics standardised information requests under the United Kingdom’s Freedom of Information Act.

Data were received from 38 clinics.

Clinics were highly inconsistent in their approaches to the issue of treatment-related harm.

They placed little or no focus on the potential for treatment-related harm in their written information for patients and for staff.

Furthermore, no clinic reported any cases of treatment-related harm, despite acknowledging that many patients dropped out of treatment.

In light of these findings, we recommend that clinics develop standardised protocols for anticipating, recording, and remedying harms, and that these protocols allow for therapies to be discontinued immediately whenever harm is identified.

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From neurasthenia to post-exertion disease: evolution of the diagnostic criteria of CFS/ME

Posted on 06/26/2019 by wames

From neurasthenia to post-exertion disease: Evolution of the diagnostic criteria of chronic fatigue syndrome/myalgic encephalomyelitis, by Inigo Murga, Jose-Vicente Lafuente in Atencion Primaria [online 8 June 2019]

Research abstract:

Changes in the terminology and diagnostic criteria for chronic fatigue syndrome/myalgic encephalomyelitis are explained in this paper.

This syndrome is a complex and controversial entity of unknown origins. It appears in the medical literature in 1988, although clinical pictures of chronic idiopathic fatigue have been identified since the nineteenth century with different names, from neurasthenia, epidemic neuromyasthenia, and benign myalgic encephalomyelitis up to the current
proposal of disease of intolerance to effort (post-effort). All of them allude to a chronic state of generalised fatigue of unknown origin, with limitations to physical and mental effort, accompanied by a set of symptoms that compromise diverse organic systems.

The International Classification of Diseases (ICD-10) places this syndrome in the section on neurological disorders (G93.3), although histopathological findings have not yet been found to clarify it.

Multiple organic alterations have been documented, but a common biology that clarifies the mechanisms underlying this disease has not been established. It is defined as a neuro-immune-endocrine dysfunction, with an exclusively clinical diagnosis and by exclusion.

Several authors have proposed to include CFS/ME within central sensitivity syndromes, alluding to central sensitisation as the common pathophysiological substrate for this, and other syndromes.

The role of the family doctor is a key figure in the disease, from the detection of those patients who present a fatigue of unknown nature that is continuous or intermittent for more than 6 months, in order to make an early diagnosis and establish a plan of action against a chronic disease with high levels of morbidity in the physical and mental sphere.

Objective:
To carry out a bibliographic review of the terminology and diagnostic criteria of the chronic fatigue syndrome/myalgic encephalomyelitis, in order to clarify the pathology conceptually, as a usefulness in the diagnosis of Primary Care physicians.

What is known about the topic / What does this study teach?

  • The estimated prevalence in Primary Care will vary between 6% and 32%, 5% -5% suffer chronic fatigue (> 6 months) and 0.5% -4.4% have CFS.
  • The CFS / ME definition requires compliance with specific clinical criteria that have been modified by the length of the history.
  • A knowledge of the subject and the improvement of the quality of life of these patients, reduces the diagnostic time, generates, therefore, satisfaction among patients and doctors, and requires a wide range of health resources.
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Inclusive education for students with chronic illness – technological challenges & opportunities

Posted on 06/25/2019 by wames

Inclusive education for students with chronic illness – technological challenges and opportunities, by Anna Wood. Chapter in book:  Artificial Intelligence and Inclusive Education Perspectives on Rethinking and Reforming Education pp135-148 [June 14 2019]

Chapter abstract:

Although the general issues related to disability inclusion have been examined in the education literature, there is still insufficient discussion of those specific challenges experienced by students with chronic illness.

This chapter explores how artificial intelligence technologies can support the educational inclusion of people with chronic illness. Drawing on my own experiences of living and studying with ME (myalgic encephalomyelitis/chronic fatigue syndrome), I will discuss the issues faced by students with chronic illnesses such as energy impairment, fluctuations in symptoms and cognitive difficulties and the educational challenges that these issues cause.

I then explore the examples of nascent, emergent and futuristic AI technologies,
sourced from both personal experience and community knowledge, that could enable better inclusion of students with chronic illness in education. These include systems which could make it easier to search for text, equations and diagrams in digital documents; voice-controlled applications which can be used to create non-textual artefacts such as
diagrams and graphs; improvements to the production of spoken language from textual documents to create more natural speech; and intelligent tutor systems which are able to produce adaptive, tailored and interactive teaching, enabling students with chronic illness to gain the best possible learning experiences.

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Patients with FM & CFS show increased hsCRP compared to healthy controls

Posted on 06/24/2019 by wames

Patients with Fibromyalgia and Chronic Fatigue Syndrome show increased hsCRP compared to healthy controls, by Nina Groven, Egil A Fors, Solveig KlæboReitan, in Brain, Behavior, and Immunity [Available online 7 June 2019] https://doi.org/10.1016/j.bbi.2019.06.010

Highlights

  • CFS/ME and Fibromyalgia share common features of inflammation.
  • C-reactive protein (CRP) is elevated in CFS/ME and Fibromyalgia.
  • CRP remains high in CFS/ME and Fibromyalgia after controlling for age and BMI.

Research abstract:
Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) are both chronic disorders that have a devastating effect on the lives of the affected patients and their families. Both conditions have overlapping clinical features that partly resemble those of inflammatory disorders. The etiology is still not understood, and it is suggested that the immune system might be a contributing factor. So far, the results are inconclusive.

The purpose of this study was to compare the two conditions and investigate the level of the inflammatory marker high-sensitivity CRP (hsCRP) in CFS and FM patients compared to healthy controls.

Female participants aged 18–60 years were enrolled in this study. The group consisted of 49 CFS patients, 57 FM patients, and 54 healthy controls. hsCRP levels were significantly higher for both the CFS and the FM groups compared to healthy controls when adjusting for age, smoking, and BMI (p < .001). There was no difference between the two patient groups. The level of hsCRP was affected by BMI but not by age and smoking.

Patients with CFS and FM have higher concentrations of hsCRP compared to healthy controls. This remains significant even after adjusting for BMI. CFS and FM cannot be distinguished from each other on the basis of hsCRP in our study.

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Differential diagnosis between “chronic fatigue” and “chronic fatigue syndrome”

Posted on 06/21/2019 by wames

Differential diagnosis between “chronic fatigue” and “chronic fatigue syndrome”, by Chang-GueSon in Integrative Medicine Research, Volume 8, Issue 2, June 2019, Pages 89-91 [https://doi.org/10.1016/j.imr.2019.04.005]

Commentary:

Fatigue is a common complaint experienced by most of subjects during lifetime, which affects approximately 30–50% of general population as point prevalence.1 According to the fatigue-lasting duration, it is classified as acute (<1 month), prolonged (>1 month, <6 months), and chronic fatigue (≥6 months), respectively. Acute fatigue is generally disappears after taking a rest or treating the causative diseases, while uncontrolled prolonged and chronic fatigue limit the physical and social activities.2 Especially, medically unexplained chronic fatigue is a debilitating status, such as idiopathic chronic fatigue (ICF) and chronic fatigue syndrome (CFS).

On the other hand, to distinguish CFS from chronic fatigue or ICF is very important in clinical practice. The reason is that although patients present fatigue symptom as their main complaint in subjects suffering from chronic fatigue or CFS, CFS is considered as to being in totally different pathologic illness.3 In 2015, US Institute of Medicine (IOM) reported diagnostic criteria for CFS as follows; three mandatory symptoms, a substantial impairment in activities accompanied by fatigue persisting for more than 6 months, post-exertional malaise (PEM) and unrefreshing sleep, and one optional symptom among cognitive impairment or orthostatic intolerance.4

Unlike chronic fatigue, CFS has characteristics of brain and CNS symptom and is counted as a complex, multisystem neuroimmune disease. As commonly referred to myalgic encephalomyelitis (ME)/CFS together, brain inflammation is frequently implied in pathology of CFS.5

Above facts brought a necessity of new name which distinguishes CFS from chronic fatigue, without the word “fatigue”. IOM therefore recommended “systemic exertion intolerance disease (SEID)” instead of CFS. The changed conception of CFS is summarized in Fig. 1. The accumulated evidences may indicate the possibility that CFS is not a part of chronic fatigue-related diseases but rather an isolated and different disease with chronic fatigue.6, 7 The major differences may come from the pathogenesis related to neuroinflammation in brain of CFS patients.8, 9

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Fig. 1. Chronic fatigue and CFS. The conventional concept (A) and newly changed concept (B) are presented.

Regarding therapeutics for CFS, a large-scale clinical study (called the PACE trial) results supported the cognitive behavior therapy (CBT) and graded exercise therapy (GET) as more effective therapies improving both fatigue and physical function.10 They were however abandoned or revised in both the U.S. and UK due to serious criticism by both scientists and patients. The criticisms were for the biases and limitations of their results as well as the unmatched recommendation of GET in contrary to PEM, a main feature of CFS by IOM diagnosis criteria.11, 12 Another trial using rituximab, anti-CD20 antibody, did not show therapeutic effects, and then no curable therapy exists to date.13 Unlike CFS, chronic fatigue generally shows the favorable clinical course. One systemic study revealed the recovery rate of 54–94% chronic fatigue, but <10% of CFS.14

Thus it is essential and therapeutically effective to stratify chronic fatigue-related diseases, at least chronic fatigue and CFS, for clinical practitioners.15, 16 Briefly, the differential diagnosis between chronic fatigue and CFS can be produced as show in Fig. 2. This was modified based on the diagnostic algorism for ME/CFS suggested by IOM in 2015.17 In this differential diagnosis, the keys are the severity of impaired individual activities due to fatigue, and complaints of PEM, unrefreshing sleep, cognitive dysfunction.

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Fig. 2. Suggested algorism for chronic fatigue, ICF and CFS.

ICF is another group with unexplained chronic fatigue, but does not meet the criteria for CFS. Prevalence of CFS is estimated approximately 1%, while ICF is higher by 10-fold of CFS in general population worldwide including in Korea.18, 19, 20 Many patients suffering from chronic fatigue traditionally have used alternative medicines including traditional herbal drugs.21 There is expectation that herbal remedies would be a suitable strategy for chronic fatigue-associated disorders in aspect of “multiple compounds and multiple targets” linked to especially CFS treatment. This article hopefully will provide a concise guide to manage patients with chronic fatigue-related complaints.

See references

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Illness duration, mood and symptom impact in adolescents with CFS/ME

Posted on 06/19/2019 by wames

Illness duration, mood and symptom impact in adolescents with chronic fatigue syndrome/ myalgic encephalomyelitis?, by Francesca K Neale, Deborah Christie, Dougal S Hargreaves, Terry Y Segal in Archives of Disease in Childhood, Jun 13 2019

Letter excerpt:

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a disabling condition that affects 0.4% to 2.4% of adolescents in the UK.

Previous studies have reported high levels of anxiety, depression and worry among adolescents with CFS/ME. In adult studies, concerns have been raised about delays in accessing specialist CFS/ME services and the impact of delays on patients’ health and well-being.

In this study, we aimed first to assess the prevalence of self-reported anxiety/depression, worry and degree of symptom impact among our patient population of adolescents with CFS/ME. We then investigated whether longer illness duration was associated with higher prevalence of self-reported anxiety/depression, worry and symptom impact at initial assessment…

Consistent with previous research, young people with CFS/ME had high levels of worry and mood disturbance; these concerns were more marked among patients who reported illness duration of greater than 24 months before specialist assessment. Although our study could not investigate the cause of delay in accessing specialist care, limited awareness of CFS/ME among young people, families, teachers and general practitioners is likely to be an important contributing factor, as well as the closure of many CFS/ME services.

Further research is needed to investigate whether earlier access to specialist services improves clinical outcomes (both in the short-term and long-term).

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Orthostatic intolerance in CFS

Posted on 06/17/2019 by wames

Orthostatic intolerance in chronic fatigue syndrome, by Richard Garner and James N Baraniuk in Journal of Translational Medicine 2019 17:185 [Published: 3 June 2019]
https://doi.org/10.1186/s12967-019-1935-y

 

Research abstract:

Background:
Orthostatic intolerance (OI) is a significant problem for those with chronic fatigue syndrome (CFS). We aimed to characterize orthostatic intolerance in CFS and to study the effects of exercise on OI.

Methods:
CFS (n = 39) and control (n = 25) subjects had recumbent and standing symptoms assessed using the 20-point, anchored, ordinal Gracely Box Scale before and after submaximal exercise. The change in heart rate (ΔHR ≥ 30 bpm) identified Postural Orthostatic Tachycardia Syndrome (POTS) before and after exercise, and the transient, exercise-induced postural tachycardia Stress Test Activated Reversible Tachycardia (START) phenotype only after exercise.

Results:
Dizziness and lightheadedness were found in 41% of recumbent CFS subjects and in 72% of standing CFS subjects. Orthostatic tachycardia did not account for OI symptoms in CFS. ROC analysis with a threshold ≥ 2/20 on the Gracely Box Scale stratified CFS subjects into three groups: No OI (symptoms < 2), Postural OI (only standing symptoms ≥ 2), and Persistent OI (recumbent and standing symptoms ≥ 2).

Conclusions:
Dizziness and Lightheadedness symptoms while recumbent are an underreported finding in CFS and should be measured when doing a clinical evaluation to diagnose orthostatic intolerance. POTS was found in 6 and START was found in 10 CFS subjects. Persistent OI had symptoms while recumbent and standing, highest symptom severity, and lability in symptoms after exercise.

Trial registration:  https://clinicaltrials.gov/ct2/show/NCT03567811

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