Medically documenting disability in ME/CFS cases [US]

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

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

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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MESiG support group meets in Cardiff, 1 July 2019

MESiG Support Group invites you to join them from 2 – 3.30 pm on Monday 1 July 2019 at Bethel Church Community Centre, Llangranog Road, Llanishen,  Cardiff, CF14 5BJ

The group will be joined by Sheila Damon and Gavin Dando who talk about ‘Mindfulness’. Some members will have the opportunity to take a short course over a few weeks. Both practitioners are experienced in Hypnotherapy, Neuro Linguistic Programming, Diet and much more.

Come and share your experiences of what helps you and what doesn’t, so all can learn and support each other, over tea/coffee and biscuits. All are welcome, please note that people with similar conditions are also welcome to come along.

 

More info: mesigwales@gmail.com      website

Next meeting: Tea in Roath Park Café at 2pm

 

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

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.

Read full paper

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EPP self-management courses in North Wales, July-Sep 2019

Chronic Disease Self Management Programme

The CDSMP is an EPP Cymru course to help people who live with a long term health condition to maintain and improve their quality of life through self-management.

What does the course involve?

Six weekly sessions, each lasting two and a half hours (including breaks and refreshments). They are very varied. There are brief talks, discussions and freethinking sessions.

The course is about learning important general skills, not specific to any one condition, including:

  • managing your symptoms
  • dealing with stress
  • depression and low self-image
  • managing pain
  • developing coping skills
  • learning ways to relax and eating healthily
  • working more closely with those caring for you
  • planning for the future.

Book your place in advance – some spaces still available.

To book a place on one of the above courses, please contact the Self Care Office:

More information about Health & Well being courses from the Betsi Cadwaladr University Health Board website  or EPP Cymru.

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure you are well enough to attend. 

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

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

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.

Read full chapter

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Activate your life wellbeing course begins Swansea, 27 June 2019

ACTivate your life courses

The course is based on Acceptance and Commitment Therapy which teaches people how to reduce their suffering and how to lead a richer, more fulfilling life by accepting the things they cannot control and making a commitment to do the things that they really care about.

We all experience suffering, pain and distress at some point in our lives, whether this be psychological or physical, so anyone and everyone is welcome to attend.

The course is run weekly over four sessions for approximately 2 hours with a break halfway through the session.

The four sessions:

  • ACT 1- You are not your mind
  • ACT 2- Facing up to your life
  • ACT 3- Being mindful
  • ACT 4- Living wisely, living well

Swansea

  • Swansea YMCA, 1 The Kingsway, Swansea SA1 5JQ
  • Room: Theatre
  • Thursdays 27th June – 11th July 2019     2-4 pm

Self help material can be used to improve feelings of stress, low mood, anxiety and other wellbeing difficulties.

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to attend

The courses and workshops are free, self-referral and open access, so there is no need to book on or register, simply choose what you feel is the most suitable for you and turn up; feel free to bring someone along and spread the word. There is no attendance register, but it is recommended that you attend all of the sessions to get the most out of it, although you can always switch between courses to fit in with your commitments.

For more information contact the Living Life Well programme at Abertawe Bro Morgannwg Health Board.       07967612246      living.lifewell@wales.nhs.uk

Self help material can be used to improve feelings of stress, low mood, anxiety and other wellbeing difficulties.

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to attend

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ME Support Group meets in Montgomery 26 June 2019

You are invited to join people with ME and their carers for a chat and a cuppa at the Dragon Hotel, Montgomery, Powys on Wednesday 26 June 2019 between 2.30 and 3.30pm.

Contact Donna Teague beforehand to confirm the meeting is going ahead.  dateague@hotmail.co.uk

Next meeting:   24 July 2019

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