Gofal iechyd synhwyrol ac ME

On 16th January 2014 the Health Minister introduced the principles of ‘Prudent healthcare’ which would shape future development of services in NHS Wales:

  • Do no harm
  • Undertake the minimum appropriate intervention
  • Work in co-production with the patient, to consider “what can we do together to address the difficulties that you are experiencing”
  • Deliver healthcare that fits the needs and circumstances of patients, and actively avoids wasteful care that is not to the patient’s benefit
  • Deliver healthcare on the basis of equity, with clinical need and nothing else determining treatment by the NHS.

He explained that this would require a change of attitude:

“the traditional way that people think of health services is as an escalator in which we are always pushing people up the levels of intervention and somehow the higher up the intervention levels you go the more prestigious it becomes and the more you feel you’ve got something good out of the health service. Prudent medicine is about saying the more we can do at a citizen level, the more we can do at a population level, the more we can do at a primary care level then the better the service we provide to patients.”

In hospitals secondary care needs to pay more attention to the list of interventions that are not normally undertaken, the INNU document (Interventions that are not normally undertaken), and NICE’s 867 ‘do not do’ clinical guidelines

4 groups will be convened to apply the prudent healthcare principles to Orthopaedics, Prescribing, ENT services and Pain management services.

The ME/CFS Task & Finish Group is due to hold its 2nd meeting on 21st February and has been instructed to work within these principles.

Summary of Health Minister’s address   Press release in Welsh

Sir Mansel Aylward on prudent healthcare

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Are ME and CFS different illnesses?

Abstract

Considerable discussion has transpired regarding whether chronic fatigue syndrome is a distinct illness from Myalgic Encephalomyelitis.

A prior study contrasted the Myalgic Encephalomyelitis International Consensus Criteria with the Fukuda and colleagues’ chronic fatigue syndrome criteria and found that the Myalgic Encephalomyelitis International Consensus Criteria identified a subset of patients with greater functional impairment and physical, mental, and cognitive problems than the larger group who met Fukuda and colleagues’ criteria.

The current study analyzed two discrete data sets and found that the Myalgic Encephalomyelitis International Consensus Criteria identified more impaired individuals with more severe symptomatology.

Are Myalgic Encephalomyelitis and chronic fatigue syndrome different illnesses? A preliminary analysis,  by LA Jason, M Sunnquist, A Brown, M Evans, JL Newton in J Health Psychol. 2014 Feb 7. [Epub ahead of print]

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Adolescents’ experiences of living with CFS

‘Sometimes it feels as if the world goes on without me’: adolescents’ experiences of living with chronic fatigue syndrome

Abstract

Aims and objectives: To explore the experience of being an adolescent with chronic fatigue syndrome.

BACKGROUND

Despite ample research, chronic fatigue syndrome is still poorly understood, and there are still controversies related to the illness. Adolescents with chronic fatigue syndrome are often unable to attend school and lose social relations with friends. The challenges they face will affect their quality of life.

DESIGN

A qualitative, phenomenological hermeneutical design.

METHOD

Six boys and twelve girls, aged 12-18, were interviewed, emphasising their own experiences living with chronic fatigue syndrome. Analyses were performed using a phenomenological hermeneutical method.

RESULTS

The core theme, ‘Sometimes it feels as if the world goes on without me’, encompasses the feelings an adolescent living with chronic fatigue syndrome might have about life. The core theme was supported by four subthemes: ‘On the side of life – locked in and shut out’; ‘the body, the illness and me’; ‘if the illness is not visible to others, does it exist?’; and ‘handling life while hoping for a better future’. The subthemes reflect the experience of social isolation, their own and others’ understanding of the illness and hope for the future.

CONCLUSIONS

Not being able to be with friends, or attend school, made the adolescents feel different and forgotten. They felt alienated in their own bodies and were struggling to be visible to themselves and to their surroundings. Spending less time with friends and more time with their parents constituted a threat to independence and development. Yet they managed to envision a better future despite all the difficulties.

RELEVANCE FOR CLINICAL PRACTICE

To provide effective support and constructive relations to adolescents with chronic fatigue syndrome, all health professions involved need insight from the persons who are themselves ill. Health centres could function as resource centres for patients and healthcare professionals.

‘Sometimes it feels as if the world goes on without me’: adolescents’ experiences of living with chronic fatigue syndrome, by Anette Winger, Mirjam Ekstedt, Vegard B Wyller, Solvi in Journal of Clinical Nursing, e-published on 20 December 2013

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Case definition criteria for CFS and ME

Abstract

BACKGROUND:

Considerable controversy has transpired regarding the core features of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Current case definitions differ in the number and types of symptoms required. This ambiguity impedes the search for biological markers and effective treatments.

PURPOSE:

This study sought to empirically operationalize symptom criteria and identify which symptoms best characterize the illness.

METHODS:

Patients (n=236) and controls (n=86) completed the DePaul Symptom Questionnaire, rating the frequency and severity of 54 symptoms.

Responses were compared to determine the threshold of frequency/severity ratings that best distinguished patients from controls.

A Classification and Regression Tree (CART) algorithm was used to identify the combination of symptoms that most accurately classified patients and controls.

RESULTS:

A third of controls met the symptom criteria of a common CFS case definition when just symptom presence was required; however, when frequency/severity requirements were raised, only 5% met criteria.

Employing these higher frequency/severity requirements, the CART algorithm identified three symptoms that accurately classified 95.4% of participants as patient or control:

fatigue/extreme tiredness, inability to focus on multiple things simultaneously, and experiencing a dead/heavy feeling after starting to exercise.

CONCLUSIONS:

Minimum frequency/severity thresholds should be specified in symptom criteria to reduce the likelihood of misclassification.

Future research should continue to seek empirical support of the core symptoms of ME and CFS to further progress the search for biological markers and treatments.

Examining case definition criteria for chronic fatigue syndrome and myalgic encephalomyelitis, by LA Jason, M Sunnquist, A Brown, M Evans, SD Vernon, J Furst, V Simonis in Fatigue. 2014 Jan 1;2(1):40-56.

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Valacyclovir (antiviral) treatment of chronic fatigue in adolescents

Abstract

Chronic fatigue syndrome (CFS) presents with fatigue, low motivation, diminished mood, and reduced activity, all symptoms having extensive diagnostic overlaps with depression. Studies have linked chronic viral infections with CFS, and antiviral therapy has effectively treated CFS in adult patients.

In a retrospective case series, 15 adolescents and preteens referred to the author for treatment-resistant depression or mood disorder were evaluated and found to have met the Fukuda diagnostic criteria for CFS.

While a subset (4/15) had been diagnosed in the past with CFS, the majority had a current diagnosis of depression or a mood disorder. The Diagnostic and Statistical Manual-IV Text Revision (DSM-IV TR) criteria for depression were not met in all patients, although 3 cases of mood disorder not otherwise specified (MD-NOS) and 1 case of Tourette syndrome (TS) plus MD-NOS were diagnosed.

Baseline scores on the Children’s Depression Inventory (CDI) were below the cutoff for depression in all but 1 patient. Baseline self-assessment scales for CFS or fatigue were obtained and sleep was evaluated with sleep logs.

All patients were treated subsequently with valacyclovir, with 93% having a positive response. At the end of treatment, scores on fatigue self-assessment scales improved significantly (P < .001). Vigor subscale scores also improved significantly (P < .001). Some patients experienced complete resolution of symptoms.

Although not every patient was tested, available laboratory testing revealed increased counts of natural killer (NK) cells and decreased human herpesvirus 6 (HHV-6) antibody titers in all patients who responded to valacyclovir.

This article discusses the significance of infectious agents in the pathogenesis of psychiatric symptoms. The study’s data support an intriguing hypothesis that a portion of treatment-resistant depression in fact may be undiagnosed CFS or other chronic viral infection.

Valacyclovir treatment of chronic fatigue in adolescents, TA Henderson in Advances in Mind-Body Medicine, Winter 2014

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Multivitamin mineral supplementation helpful in CFS

Abstract

Background

Chronic fatigue syndrome (CFS) is characterized by medically unexplained persistent or reoccurring fatigue lasting at least 6 months. CFS has a multifactorial pathogenesis in which oxidative stress (OS) plays a prominent role. Treatment is with a vitamin and mineral supplement, but this therapeutic option so far has not been properly researched.

Material and Methods

This prospective study included 38 women of reproductive age consecutively diagnosed by CDC definition of CFS and treated with a multivitamin mineral supplement. Before and after the 2-month supplementation, SOD activity was determined and patients self-assessed their improvement in 2 questionnaires: the Fibro Fatigue Scale (FFS) and the Quality of Life Scale (SF36).

Results

There was a significant improvement in SOD activity levels; and significant decreases in fatigue (p=0.0009), sleep disorders (p=0.008), autonomic nervous system symptoms (p=0.018), frequency and intensity of headaches (p=0.0001), and subjective feeling of infection (p=0.0002). No positive effect on quality of life was found.

Conclusions

Treatment with a vitamin and mineral supplement could be a safe and easy way to improve symptoms and quality of life in patients with CFS.

Multivitamin mineral supplementation in patients with chronic fatigue syndrome, by Daniela Maric et al in Med Sci Monit 2014; 20:47-53

 

 

 

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Epstein Barr virus following immune deficiency found in CFS subgroup

Abstract

Epstein-Barr virus (EBV) has long been discussed as a possible cause or trigger of Chronic Fatigue Syndrome (CFS).

In a subset of patients the disease starts with infectious mononucleosis and both enhanced and diminished EBV-specific antibody titers have been reported. In this study, we comprehensively analyzed the EBV-specific memory B- and T-cell response in patients with CFS. While we observed no difference in viral capsid antigen (VCA)-IgG antibodies, EBV nuclear antigen (EBNA)-IgG titers were low or absent in 10% of CFS patients.

Remarkably, when analyzing the EBV-specific memory B-cell reservoir in vitro diminished or absent number of EBNA-1- and VCA-antibody secreting cells was found in up to 76% of patients. Moreover, the ex vivo EBV-induced secretion of TNF-a and IFN-c was significantly lower in patients. Multicolor flow cytometry revealed that the frequencies of EBNA-1-specific triple TNF-a/IFN-c/IL-2 producing CD4+ and CD8+ T-cell subsets were significantly diminished whereas no difference could be detected for HCMV-specific T-cell responses.

When comparing EBV load in blood immune cells, we found more frequently EBER-DNA but not BZLF-1 RNA in CFS patients compared to healthy controls suggesting more frequent latent replication. Taken together, our findings give evidence for a deficient EBV-specific B- and T-cell memory response in CFS patients and suggest an impaired ability to control early steps of EBV reactivation. In addition the diminished EBV response might be suitable to develop diagnostic marker in CFS.

 

Deficient EBV-Specific B- and T-Cell Response in Patients with Chronic Fatigue Syndrome, by Madelin Loebel et al in PLoS ONE 9(1): e85387, January 2014

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CFS patients feel increasingly isolated

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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Association between cognitive performance, physical fitness, and physical activity level

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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Medical students’ views of CFS

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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