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ME/CFS patients’ unmet health & social care needs in the UK

  [ 26 votes ]   [ 1 Comment ] • November 2, 2011

Social support needs for equity in health and social care: A thematic analysis of experiences of people with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis
– Source: International Journal for Equity in Health, Nov 2, 2011

By J C De Carvalho Leite, F Poland, et al.

[Note: the free full text of this report can be found here]

Background: Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).

This has posed challenges both for those providing and those seeking support providers - in building shared understanding of the condition and of actions to address it.

This qualitative study reports on needs for equity in health and social care expressed by adults living with CFS/ME.

Methods: The participants were 35 adults with CFS/ME in England, purposively selected to provide variation in clinical presentations, social backgrounds and illness experiences.

Accounts of experienced needs and needs-related encounters with health and social services were obtained through a focus group (n=6) and semi-structured interviews (n=35).

These were transcribed and needs related topics identified through data-led thematic analysis.


Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas:

1. Illness symptoms, functional limitations and illness management;

2. Practical support and social care;

3. Financial support.

Access of people with CFS/ME to support from health and social services was seen to be constrained by:

• Barriers stemming from social, cultural, organisational and professional norms and practices,

• Further heightened for disadvantaged groups including some ethnic minorities.

These reduced opportunities for their illness to be explained, or associated functional limitations and social disadvantages to be addressed through social support.

Participants sought more understanding:

• Of bio-psycho-social aspects of CFS/ME,

• Of felt needs of people with CFS/ME

• And of human rights and disability rights, for providing person-centered, equitable care.

Conclusions: Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed to address equity issues in support needs expressed by people with CFS/ME - to be underpinned by research-based knowledge and communication, for public and professional education.

Policy development should include shared decision-making and coordinated action across organizations working for people with CFS/ME, human rights, and disadvantaged groups.

Experiences of people with CFS/ME can usefully inform an understanding of equity in their health and social care.

Source: International Journal for Equity in Health, Nov 2, 2011. School of Allied Health Professions, University of East Anglia, Norwich; London School of Hygiene and Tropical Medicine, London; Faculty of Society and Health, Buckinghamshire New University, Uxbridge, Middlesex; Sports Therapy and Physiotherapy Division, University of Bedfordshire, Luton, Bedfordshire; Postgraduate Medical Institute, University of Hull, Cottingham, East Yorkshire, England, UK.[Email: Fiona Poland]

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Article Comments Post a Comment

ME/CFS patients' unmet Health and Social needs
Posted by: joanne60
Nov 7, 2011
The NICE guidelines say that ME/CFS is a diagnosis by exclusion one of the exclusions named is Lyme Disease. In the UK 75% of patients previously diagnosed with ME/CFS find their illness is Lyme Disease and on appropriate treatment for Chronic Lyme Disease their symptoms improve. Many world experts of ME/CFS David Bell, De Meirier, Nancy Klimas, Mikovits recognise that for many Lyme disease is in the mix. Our Health Authorities are in denial about Chronic lyme Disease preferring to think of it as rare and easy to cure but as testing can miss upto 50% of cases it needs to be a clinical diagnosis something most doctors are not experienced in doing. For further information see UK charity website
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