Assessment of energy metabolism by Serum Fluorescence Emission

Researchers from Witchita Kansas examined the metabolic component  of CFS, by determined serum NAD(P)H levels in 44 CFS patients and 30 healthy control  subjects by measuring serum fluorescence emission at 450 nm. It was directly correlated with serum coenzyme Q10 levels  and inversely correlated with urine hydroxyhemopyrrolin-2-one (HPL) levels.

Based on these findings, they propose the use of serum NAD(P)H, measured as an intrinsic serum  fluorescence emission, to monitor metabolism and fatigue status in people with CFS.

Following patient NAD(P)H levels over time may aid in selecting therapeutic strategies and monitoring treatment outcome.

Assessment of the Energy Metabolism in Patients with Chronic Fatigue Syndrome by Serum Fluorescence Emission

 

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MRC funded research projects

Summaries of the current research projects funded by the MRC aimed at ‘Understanding the Mechanisms of CFS/ME’ have been added to the the section ‘MRC-funded research projects’ of the Medical Research Council’s CFS/ME page.

 

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Is overall genome instability cause of ME/CFS?

Henry Heng, an American researcher has been funded by the National CFIDS Foundation adn Nancy Taylor Foundation for Chronic Diseases to discover whether overall genome instability rather than a specific molecular mechanism may cause chronic fatigue and immune dysfunction syndrome or CFIDS (an American term for ME/CFS).

Dr Heng will use  spectral karyotyping or SKY analysis, an advanced type of genomic testing to look for chromosomal aberrations or genomic instability in CFS/ ME patients.  Dr Heng believes scientists who have looked to single genes / mutations as the cause of diseases with complex sets of symptoms need to broaden their search to genomes.

Is overall genome instability cause of ME/CFS? 

 

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South Wales Echo on Post-viral fatigue syndrome

Dr Joanna Longstaffe describes Post-viral fatigue syndrome (PVFS) and advises:

the most important thing for you to do is to rest up, maintain a healthy diet and general lifestyle and try to remain as stress free as possible to give yourself the best chance of a full recovery.

 

 

 

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Voices from the shadow – people with ME speak out

Voices from the shadows is a compassionate and moving exposé, bearing witness to the devastating consequences of psychiatric prejudice and medical ignorance about one of the most prevalent illnesses of the 21st Century.

The film presents interviews with medical experts and people with ME/CFS and their carers, together with archive and other material provided by them in a collaborative effort. All involved testify to the shocking severity of this physical illness and challenge the deeply unethical professional conduct of sections of the medical and the psychiatric professions who deny the biological basis of a neurologically debilitating, severe, chronic and occasionally fatal illness, even though it has been officially recognized as such by the World Health Organisation for over 40 years.

The film shows how children and young people have been coerced or forced, under threat of removal from their parents and/or admission to psychiatric wards, to undertake exercise programmes that have resulted in years and even decades of bedridden isolation, often in darkened rooms, suffering long-term paralysis and even death. As one of the medical experts involved makes clear, this tragic situation is the consequence of a situation where research funding follows political policy rather than medical need.

Watch the trailer online

Watch the trailer on youtube

Buy the DVD  £6 each plus a flat rate of £2 for p&p for any number of disks

Watch online from anywhere in the world for £2.39

 

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Chronic fatigue improves in first year with or without treatment

Researchers from London studied 222 patients reporting fatigue for over three months. They were given either ‘usual care’ – providing a booklet describing causes of fatigue and self-help techniques based on cognitive behavioural therapy – or NICE-approved therapies such as counselling and graded exercise.

They found fatigue symptoms in patients treated with graded exercise therapy or counselling were no better during this time than those who had been managed with usual care.

There was an improvement in the Chalder fatigue score over time regardless of which treatment group patients were in. The improvement between six month and 12 month follow-up was not significantly different between those receiving usual care and those receiving either graded exercise therapy or counselling.

In general, dissatisfaction with care was high. But there was no significant difference between the three groups at six months.  However, there was a difference in dissatisfaction between groups at 12 months, with those in the booklet group being more dissatisfied.

Study lead, Professor Leone Ridsdale, professor of neurology and general practice at King’s College London,said: ‘Our findings suggest that many patients improve substantially in the first six months.’

‘From the current evidence, we propose that after assessment of patients who present with fatigue in primary care, doctors offer to reassess them in six months. If fatigue symptoms persist, the practitioner and patient may discuss further therapy options.’

The effect of counselling, graded exercise and usual care for people with chronic fatigue in primary care: a randomized trial

Wait 6 months before treating fatigue


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Ampligen trial shows benefits for long-standing debilitating CFS

A major study on the effects of Ampligen (Rintatolimod) on CFS  provides added proof of Ampligen’s efficacy in ME/CFS following America’s Food & Drug Administration’s refusal to approve Ampligen for CFS in Dec 2009.

234 subjects with long-standing, debilitating CFS at 12 sites were given either twice weekly IV rintatolimod or a placebo.

Researchers reported that Ampligen increased exercise tolerance by 16.6%, reduced medication usage, improved most well-being scores and was safe.

A Double-Blind, Placebo-Controlled, Randomized, Clinical Trial of the TLR-3 Agonist Rintatolimod in Severe Cases of Chronic Fatigue Syndrome

 

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Nursing Standard article on ME/CFS

Abstract:

Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a debilitating illness that affects many systems of the body, particularly the nervous and immune systems. The condition affects all age, racial, ethnic and socioeconomic groups. This article focuses on the knowledge, understanding and skills necessary to recognise, assess, manage and support patients with CFS/ME. The principles of management and rehabilitation can be applied by nurses and other healthcare professionals irrespective of the clinical setting and context.

Chronic fatigue syndrome or myalgic encephalomyelitis by Dianne Burns, Collette Bennett, Amanda McGough

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The impact of stress management skills on CFS

Research from Florida, USA:

OBJECTIVES: Stressors and emotional distress responses impact chronic fatigue syndrome (CFS) symptoms, including fatigue. Having better stress management skills might mitigate fatigue by decreasing emotional distress. Because CFS patients comprise a heterogeneous population, we hypothesized that the role of stress management skills in decreasing fatigue may be most pronounced in the subgroup manifesting the greatest neuroimmune dysfunction.

METHODS: In total, 117 individuals with CFS provided blood and saliva samples, and self-report measures of emotional distress, perceived stress management skills (PSMS), and fatigue. Plasma interleukin-1-beta (IL-1β, IL-2, IL-6, IL-10, and tumor necrosis factor-alpha (TNF-α), and diurnal salivary cortisol were analyzed.

We examined relations among PSMS, emotional distress, and fatigue in CFS patients who did and did not evidence neuroimmune abnormalities.

RESULTS: Having greater PSMS related to less fatigue (p=.019) and emotional distress (p<.001), greater diurnal cortisol slope (p=.023) and lower IL-2 levels (p=.043).

PSMS and emotional distress related to fatigue levels most strongly in CFS patients in the top tercile of IL-6, and emotional distress mediated the relationship between PSMS and fatigue most strongly in patients with the greatest circulating levels of IL-6 and a greater inflammatory (IL-6):anti-inflammatory (IL-10) cytokine ratio.

DISCUSSION:  CFS patients having greater PSMS show less emotional distress and fatigue, and the influence of stress management skills on distress and fatigue appear greatest among patients who have elevated IL-6 levels.

These findings support the need for research examining the impact of stress management interventions in subgroups of CFS patients showing neuroimmune dysfunction.

Stress management skills, neuroimmune processes and fatigue levels in persons with chronic fatigue syndrome.

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300-mile bicycle ride for ME charity

Welsh Secretary Cheryl Gillan’s special adviser Richard Hazlewood is going on a 300-mile bicycle ride to raise money for charity after his wife Rachel was diagnosed with ME.

Next September he will ride the 300 miles between London, Amsterdam and Brussels in aid of the ME Association. People can contribute to the challenge online.

Wales online article

 

 

 

 

 

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