Experiences of daily activity in CFS/ME & implications for rehabilitation programmes

Posted on 01/26/2014 by wames

Abstract

PURPOSE

Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (CFS/ME), has a significant impact upon daily functioning. Most recommended treatments aim to alter activity patterns based upon assumptions of activity avoidance. However, as there is limited research on the experience of activity and occupational beliefs in people with CFS/ME, this study took a qualitative approach to understand the meaning of activity in people with this disabling condition.

METHOD

This study applied a social constructivist grounded theory methodology. Semi-structured interviews took place with 14 participants attending a Specialist CFS/ME Service in England.

FINDINGS

The emergent themes described a premorbid state of constant action with difficulty stopping an activity once it had commenced. When this pattern was interrupted by illness, participants attempted to maintain their previous level of occupational engagement. Negative associations and emotions were described in response to the concept of doing nothing or limited activity. A recurring cycle was reported of increasing activity levels when symptoms improved, followed by post exertional symptoms.

CONCLUSIONS

Consequently, participants’ beliefs about concepts of both activity and inactivity need to be considered within the application of rehabilitation programmes for CFS/ME that aim to modify activity related behaviours.

Implications for Rehabilitation: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is commonly treated in the UK using activity modification.

In this small qualitative study, patients expressed negative feelings and beliefs towards the concept of doing nothing and therefore sought to push their activity levels when this was available, leading to recurring cycles of symptoms and activity. Rehabilitation programmes need to consider how people with CFS/ME engaged with activity and inactivity before the condition and how this may impact upon engagement with activity-based rehabilitation programmes.

Experiences of daily activity in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their implications for rehabilitation programmes, by Sue Pemberton and Diane L. Cox in Disability and Rehabilitation, 27 December 2013 [Epub ahead of print]

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CFS patients feel increasingly isolated

Posted on 01/21/2014 by wames

Sufferers of Chronic Fatigue Syndrome (CFS) are feeling increasingly isolated due to their family and friends’ lack of understanding of their condition, a study has revealed.

The study, carried out by talkhealth, one of the UK’s leading online social Health communities, revealed that a massive 70 per cent of CFS sufferers felt that their family and friends did not understand their condition and appreciate the affect it had on their lives.

Furthermore, nearly half of the respondents felt that their condition had not been taken seriously by a medical professional, adding to their feelings of isolation.

The study showed that the top five most common symptoms experienced by CFS sufferers are tiredness after exertion, un-refreshing sleep, muscle and joint pain, chronic physical exhaustion and cognitive difficulties such as memory loss.

Dr Jon Rees, a spokesperson for talkhealth comments:

“Chronic fatigue syndrome is something I see surprisingly often as a GP. It is an extremely frustrating condition not only for patients who often feel that their problems are not taken seriously but also for relatives and friends who may struggle to understand a condition that has no outward signs of physical illness. Patients may also experience cynicism from some people in the medical profession including doctors, who do not recognise CFS as a true medical condition. However GPs are increasingly realising the true impact of the symptoms and are better equipped to offer support and onward referral to specialist services.”

Dr Rees continues:

“It is vital that parents receive adequate support as CFS can have a huge impact on their quality of life. They must be fully assessed for any underlying cause that can be treated, such as underactive thyroid or coeliac disease but if no cause can be identified and the symptoms are significant, referral to a specialist chronic fatigue service can often be useful.”

Chronic fatigue syndrome (CFS), affecting 250,000 people in the UK, causes persistent fatigue (exhaustion) that affects everyday life and doesn’t go away with sleep or rest.

The condition is also known as ME, which stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. Both CFS and ME are commonly used terms.

CFS patients feel increasingly isolated,  by Taryn Davies in FemaleFirst.co.uk,  20 September 2013

 

 

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Medical students’ views of CFS

Posted on 01/21/2014 by wames

Abstract 

Chronic fatigue syndrome receives little attention in the medical curriculum. This study explores UK medical students’ knowledge of and attitudes towards chronic fatigue syndrome.

Semi-structured interviews (average length 22 minutes) were conducted with 21 participants (7 females and 14 males) in years 3 (n=4), 4 (n=11) and 5 (n=6) of their studies. Inductive thematic analysis taking a realist perspective produced three themes: limited knowledge, influences on attitudes and training needs.

Students acquired their knowledge and attitudes largely from informal sources and expressed difficulty understanding chronic fatigue syndrome within a traditional biomedical framework. Incorporating teaching about chronic fatigue syndrome into the medical curriculum within the context of a biopsychosocial understanding of illness could encourage more positive attitudes towards chronic fatigue syndrome.

Understanding medical students’ views of Chronic Fatigue Syndrome: A qualitative study by Alexandra Laura Stenhoff, Shireen Sadreddini, Sarah Peters, Alison Wearden in the Journal of Health Psychology, 20 September 2013. (e-published before print)

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Which symptom would you most want health professionals in Wales to help you with?

Posted on 10/15/2013 by Pixelwave

Which symptom would you most want health professionals in Wales to help you with?

  • Fluctuating Energy (40%, 4 Votes)
  • Cognitive (20%, 2 Votes)
  • Stomach, Bowel, Nausea (20%, 2 Votes)
  • Sleep (10%, 1 Votes)
  • Pain (10%, 1 Votes)
  • Balance (0%, 0 Votes)
  • Psychological (depression, anxiety, low mood etc.) (0%, 0 Votes)
  • Allergies & Sensitivities (0%, 0 Votes)
  • Other (0%, 0 Votes)

Total Voters: 10

Loading ... Loading ...

Email us if you chose option 9, or have any comments on this poll.

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Dr Nigel Speight outlines the history of ME

Posted on 06/12/2013 by wames

WAMES’ medical advisor and consultant paediatrician Nigel Speight reviews the major historical developments of the last 50 years, describes the clinical pattern and spectrum of severity, and then explores the current major controversies surrounding the subject.

Myalgic encephalomyelitis/chronic fatigue syndrome: Review of history, clinical features, and controversies.  Nigel Speight in Saudi J Med Med Sci 2013;1:11-3

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Caru James interview about ME on S4C

Posted on 05/14/2013 by wames

Caru James talks in Welsh on S4C’s Prynhawn Da about her experience of ME and employment with ME.

Prynhawn Da episode 53 (available until 20 June) Caru’s interview begins at 27 minutes for 5 minutes.

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ME recognition & care ‘lacking’ in Wales

Posted on 05/14/2013 by wames

An ITV news report on 13th May 2013 highlighted the problems faced by people with ME in finding health and social care in Wales:

People with the condition ME in Wales say they suffer from an absence of specialist care, and have found a lack of sympathy and knowledge in the NHS and social services.

Michelle Penny is 28 and from Dinas Powys in the Vale of Glamorgan. She describes how her “day-to-day life is really difficult”, and that she has been “pushed to the back and ignored”.

“We have a growing recognition and a growing investment in conditions such as Alzheimer’s, but conditions such as ME are not so readily recognised or invested in” says Ana Palazon, Chair of the Wales Neurological Alliance. “We want parity and equity of recognition and services for all conditions.”

The Welsh Government says “progress has not been universal across Wales” since it published a care strategy for the treatment of patients with ME in 2011.

The Welsh Government requires Health Boards to put in place measures to ensure prompt diagnosis and treatment for patients with ME. A care pathway was set out in 2011, with the involvement of the Chronic Fatigue Syndrome Task and Finish Group commissioned by the Minister for Health and Social Services in 2010.

Last year, the Welsh Government asked all Health Boards for updates on service developments since the publication of this guidance. The responses received show that there have been some improvements, but that progress has not been universal across Wales.

Therefore the Task and Finish Group will be reconvened this year to consider how services can be further developed to meet the needs of people with CFS and ME in Wales.

Watch the broadcast

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Does the energy envelope theory improve function?

Posted on 05/09/2013 by wames

Abstract

Objective/Hypothesis: The objective of this study was to examine sub-types of individuals with chronic fatigue syndrome based on variables that are associated with the energy envelope theory and to examine the role of coping strategies in explaining the differences found between the subtypes.

Methods: Cluster analysis was used. Grouping variables included physical functioning, post-exertional malaise severity, and the extent to which an individual was outside of the energy envelope. These clusters were evaluated using discriminant function analysis to determine whether they could be differentiated based on coping styles.

Results: Cluster analysis identified three groups. Clusters 1 and 2 were consistent with the energy envelope theory. However, Cluster 3 was characterized by patients with the most impairment, but they were to a lesser extent exceeding their energy envelope. Coping strategies explained a small percentage (10%) of the variance in differentiating the clusters.

Discussion: Energy maintenance may be associated with improved functioning and less severe symptoms for some. However, patients in Cluster 3 were closer to remaining within their energy envelope and also used higher levels of adaptive coping but were more impaired than Cluster 2. This suggests that adaptive coping strategies were not associated with improved health, as members of Cluster 3 were severely limited in functioning.

Examining the energy envelope and associated symptom patterns in chronic fatigue syndrome: does coping matter? Brown AA, Evans MA, Jason LA  Chronic Illness 2013 Apr 12. [Epub ahead of print]

Energy Conservation/Envelope Theory Interventions to Help Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.  Jason LA et al  Fatigue. 2013 Jan 14;1(1-2):27-42

 

 

 

Energy Conservation/Envelope Theory Interventions to Help Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

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Couples’ experiences of interacting with others in CFS: a qualitative study

Posted on 05/08/2013 by wames

Abstract

Objectives: Social isolation and stigma are frequently reported by patients with chronic fatigue syndrome/myalgic encephalomyelitis and relationships in the home environment with those close to the patients (their ‘significant others’) may thus be particularly important. Rather little attention has yet been paid to the beliefs and experiences of ‘significant others’ themselves in this context. This study sought to explore in-depth the beliefs and experiences of both patients and ‘significant others’ in relation to chronic fatigue syndrome/myalgic encephalomyelitis.

Methods: In-depth interviews using a semi-structured interview schedule designed around the core constructs of the Common-Sense Model of self-regulation were conducted with two patients with chronic fatigue syndrome/myalgic encephalomyelitis and their spouses. Interpretative Phenomenological Analysis was used to analyse interview data.

Results: Experiences of social interactions in relation to chronic fatigue syndrome/myalgic encephalomyelitis with others outside of the relationship dyad emerged as a key issue for all participants when reflecting on their experiences of living with the condition. These concerns are presented under two themes: interactions with healthcare professionals and interactions with the social world.

Conclusions: It is evident that significant others play an important role in the lived experience of chronic fatigue syndrome/myalgic encephalomyelitis. For both patients and significant others, the wider social world and interactions with outside others may be important influences on dyadic coping in chronic fatigue syndrome/myalgic encephalomyelitis. Both future research and treatment interventions could usefully include a ‘significant other’ perspective.

Couples’ experiences of interacting with outside others in chronic fatigue syndrome: a qualitative study.  Joanna Brooks, Nigel King, Alison Wearden  Chronic Illness April 12, 2013 [Epub ahead of print]

 

 

 

 

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Carers & social care reform – Sylvia Penny interview

Posted on 01/29/2013 by wames

WAMES’ volunteer Sylvia Penny who cares for her adult daughter with ME, her adult son with asperger’s and her 90 year old mother, was one of the people interviewed on BBC Wales about the proposed changes to social care in Wales.

In the draft bill more people who look after disabled, sick and frail relatives could be entitled to help at home under proposals to change the law in Wales. Carers will have their needs assessed and could get a payment that puts them in control of their own care budget. But the Welsh government has said extra funding will not be required to deliver the Social Services and Wellbeing Bill.

WAMES joins other charities asking who will benefit, what support will be offered and when – 2016 is a long time away!

BBC news item: Helping hand for carers proposed in Wales

The Deputy Minister for Children and Social Services, Gwenda Thomas introduces the bill in a video on the Welsh Government website. (She speaks in Welsh first, then English)

According to the government the legislation will:

  • Strengthen powers for safeguarding of children and adults, so that vulnerable people at risk in our society can be protected more effectively;
  • Allow Welsh Ministers to consider extending the range of services available by direct payments, meaning people will have more control over the services they use;
  • Introduce national eligibility criteria and ensure people are assessed on what they need, rather than just on what services are available locally;
  • Introduce portable assessments, which means if people move from one part of Wales to another they will not require their needs to be re-assessed if these haven’t changed;
  • Introduce a National Outcomes Framework to set out very clearly what children and adults can expect from social services, to measure achievements and see where improvements are needed; Contribute to this through the I matter, we matter campaign
  • Introduce equivalent rights for carers so that people who care for someone such as an elderly or disabled relative or friend would get similar rights to the people they care for; and
  • Establish a National Adoption Service to improve the outcomes of children in need of a permanent family.
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