As autonomic nervous system dysfunction is frequently reported in CFS with orthostatic intolerance (a common symptom that can be objectively assessed), researchers from Newcastle University explored the clinical value of non-invasive optical multi-site photoplethysmography (PPG) technology to assess cardiovascular responses to standing.

A significant reduction in the overall pulse timing response to controlled standing was found for the CFS group. There were no significant differences between subject groups for the AMP measure at any site. Changes in AMP with tilt were, however, weakly significantly and negatively correlated with fatigue severity (p < 0.05). Receiver operating characteristic (ROC) analysis of timing measures produced an area under the curve of 0.81. Experimental linear discriminant classification analysis comparing both timing and amplitude measures produced an overall diagnostic accuracy of 82%.

Pulse wave abnormalities have been observed in CFS and represent a potential objective measure to help differentiate between CFS patients and healthy controls.

Full abstract

The 7th Invest in ME International ME/CFS Conference 2012 will be held in Westminster, London, on 1st June 2012. CPD Credits will be available for healthcare professionals.

Discounts are available for early registration and payment until 16th March 2012. A discount is also available for healthcare professionals if WAMES sponsors you. Contact Jan to discuss this.

Benefits of attending Invest in ME 2012 Conference:

• Increase your understanding of diagnosis, treatment and management of ME
• Explore current and future biomedical research into ME
• Assess the role of immunological markers in ME
• Learn about ongoing clinical trials using Rituximab to treat ME patients
• Learn about inflammation in the CNS and its contribution to neurological disease
• Learn about the function of the immune response in the gut
• Share and exchange ideas with the leading practitioners in the field

IIMEC7 will be of interest to:

• Specialists in ME (CFS)
• GPs with an interest in ME (CFS)
• Neurologists
• Immunologists
• Virologists
• Palliative care nurses
• Occupational Therapists
• Specialists in pain management
• Specialists in care of the chronically ill
• Community nurses
• All trainees in these disciplines
• ME Support groups and charities

Confirmed Speakers:

• Dr Donald Staines Associate Professor, Bond University, Public Health Physician, Australia
• Professor Olav Mella  University of Bergen, Institute of Medicine, Section for Oncology
• Dr Øystein Fluge  University of Bergen, Institute of Medicine, Section for Oncology
• Dr Sonya Marshall-Gradisnik   Associate Professor, Biochemistry, Bond University, Australia
• Professor Hugh Perry   Professor of Experimental Neuropathology, University of Southampton
• Dr Mario Delgado   Head of Department of Immunology and Cell Biology, Institute of Parasitology and Biomedicine, Spain
• Dr Daniel Peterson    Simmaron Research, USA
• Dr Ian Gibson   Former Dean of Biological Sciences, University of East Anglia

Additional speakers are expected to be announced shortly

More information

Almost half (49%) of all patients referred to a specialist CFS service in London during 2007-8 did not have a diagnosis of CFS. Thirty-seven percent of referrals, screened by both a psychiatrist and a physician, were declined at the point of referral, sometimes for more than one reason, of which 61% were for likely alternative medical and psychiatric diagnoses. A further 46% of patients assessed did not receive a diagnosis of CFS…

The commonest alternative medical diagnoses of those assessed were sleep disorders and the commonest alternative psychiatric diagnosis was depressive illness…

… this paper replicates two previous studies finding high rates of misdiagnosis in patients accepted and assessed in a secondary care CFS service. The NICE guideline suggests that patients with CFS should be diagnosed and managed in primary care, and specialist CFS services used for patients with severe and disabling symptoms. Our results suggest that this may not be the best guidance. These results have implications for training, care pathways and service design, particularly in primary care and those specialist services without a doctor. Specialist services need doctors who are equally confident in making both medical and psychiatric diagnoses.

Abstract and full article

Italian researchers aimed to provide a clinical and psychometric assessment (i.e. of psychological variables such as intelligence, aptitude, and personality traits) of CFS patients with and without depressive features.

Higher levels of somatic complaints were found in CFS patients than in healthy subjects, whereas augmented depressive and obsessive-compulsive symptoms were observed only in the depressed CFS subgroup.  A selective impairment in the capacity to identify feelings and emotions was observed, with non-depressed CFS patients showing an intermediate score between depressed CFS and healthy controls.

A higher fatigue severity in depressed CFS patients, with respect to non-depressed ones, was observed. In conclusion, comorbid depression in CFS significantly increased the level of psychophysical distress and the severity of alexithymic traits (i.e. inability to express feelings with words). These findings suggest an urgent need to address and treat depressive disorders in the clinical care of CFS cases, to improve social functioning and quality of life in such patients.

Abstract

On Wednesday night (11th January) the UK Government was defeated in the Lords on 3 counts. The welfare reform bill was amended so that ESA in youth will not be axed, many cancer patients will continue to be exempt from the work capability assessment and contribution-based ESA for claimants in the work-related activity group will be paid for two years instead of just one (although late at night after most peers had gone home Lord Freud succeeded in limiting this to current claimants only). Next week we need to put maximum pressure on MPs to ensure this is not overturned when the Welfare Reform Bill returns to the Commons.

DLA and PIP will be debated next week in the Lords and you will be able to join WAMES and others in the Hardest Hit campaign to “Tweet to Defeat.” Thanks to all of you who contacted your MP or tweeted a Peer.

There is still time to sign Pat Onion’s petition:

Stop and review the cuts to benefits and services which are falling disproportionately on disabled people, their carers and families.

Roedd ymchwilwyr o Fryste eisiau gwybod pa ffactorau a rwystrai plant gyda CFS/ME rhag cael mynediad at ofal. Gan ddefnyddio asesiadau hunan-gyflawni gyda 405 o blant a chyfweliadau rhannol-strwythuredig gyda rhieni, darganfyddasant mai dim ond 19% o blant a gafodd eu gweld gan uned arbenigol o fewn yr amser a argymhellwyd gan NICE.

Roedd y rhesymau am hyn yn cynnwys

• diffyg gwybodaeth am y cyflwr ar ran meddygon teulu, paediatryddion a rhieni
• agweddau a chredoau negyddol gan feddygon teulu, paediatryddion a seicolegwyr plant
• rhieni yn ymdrechu i gyfathrebu mai gan eu plentyn roedd salwch, ac nid nhw eu hunain

Daethant i i’r farn fod Meddygon Teulu, Seiciatryddion Plant a Phaediatryddion angen mwy o wybodaeth am CFS/ME ac angen llwybrau cyfeirio addas i sicrhau fod cyfeirio i wasanaethau arbenigol yn digwydd o fewn amser derbyniol.

Erthygl

Thanks to a generous gift from an anonymous private donor, Action for M.E. is making two grants of up to £25,000 each available for researchers who want to investigate the biology of the illness.

The call for proposals focuses on autonomic dysfunction, fatigue, immune dysregulation and pain.

Proposals must be submitted by email by 4pm Friday 20 January 2012

More information

The Medical Research Council (MRC) has awarded more than £1.6m for research into the causes of the debilitating condition chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)

The investment will fund five new projects to investigate the mechanisms and underlying biological processes involved in the illness, which could eventually lead to better diagnosis and the development of more effective treatments.

In February 2011, the MRC issued a £1.5m call for proposals in these areas, aimed at encouraging fresh partnerships between established CFS/ME researchers and those with strong scientific credentials, but new to this field. The key areas were:

• Nervous system disorders
• Cognitive symptoms
• Fatigue
• Immune dysregulation (eg. through viral infection)
• Pain
• Sleep disorders

In response to the high quality of the applications received, the MRC decided to provide an extra £150,000 to support the package of successful projects. The awards range in total value from £120,000 to £450,000 and the successful applicants were:

• Dr Wan Ng, Newcastle University
• Professor Julia Newton, Newcastle University
• Professor Anne McArdle, University of Liverpool
• Professor David Nutt, Imperial College London
• Dr Carmine Pariante, King’s College London

While the applications addressed most of the priority areas highlighted in the call, the MRC will announce shortly how it plans to stimulate research activity in those areas which were not covered.

Press release

More information

Ychydig cyn y Nadolig, cafodd Rheoliadau Strategaethau ar gyfer Gofalwyr (Cymru) 2011 gymeradwyaeth unfrydol gan y Cynulliad Cenedlaethol. Bydd y Rheoliadau’n rhoi Mesur Strategaeth ar gyfer Gofalwyr (Cymru) 2010 a mae’r Mesur yn rhoi dyletswydd ar awdurdodau dynodedig i baratoi, cyhoeddi a gweithredu strategaeth er budd gofalwyr sy’n darparu gofal di-dâl. Bydd y strategaethau’n nodi sut y bydd gwybodaeth a chyngor yn cael eu rhoi i’r gofalwyr hyn er mwyn eu helpu i gyflawni eu rôl yn effeithiol. Byddan nhw hefyd yn nodi sut y bydd gofalwyr yn cael rhoi eu sylwadau am benderfyniadau sy’n effeithio arnynt a’r rheini y maen nhw’n gofalu amdanynt. Bydd y gofalwyr yn cael cymryd rhan yn y penderfyniadau hynny.

Yr awdurdodau dynodedig cyntaf yw Byrddau Iechyd Lleol ledled Cymru, Ymddiriedolaeth GIG Felindre, Ymddiriedolaeth Ambiwlans Cymru a gwasanaethau cymdeithasol awdurdodau lleol. Disgwylir i’r Byrddau Iechyd gydweithio â’r awdurdodau sy’n bartneriaid allweddol i gynllunio a darparu’r strategaethau hyn. Mae’r partneriaid yn cynnwys y Gwasanaethau Cymdeithasol, mudiadau Trydydd Sector sy’n cynrychioli gofalwyr, a meddygon teulu. Mae £5.8 miliwn wedi’i neilltuo ar gyfer y Byrddau Iechyd dros y tair blynedd nesaf i’w helpu i hyfforddi staff a rhoi eu strategaethau lleol ar waith. Mae’r gofyniad yn glir bod yn rhaid iddynt gydweithio a’u partneriaid a rhannu’r arian yn briodol.

Datganiad i’r wasg

A review has been published describing the principle of pacing and how this can be adapted to meet individual abilities and preferences. A critical evaluation of the research was conducted to ascertain the benefits and limitations of this strategy.

Based on various studies, it is proposed that pacing can help to stabilize the condition and avoid post-exertional malaise. Pacing offers practitioners an additional therapeutic option which is acceptable to the majority of patients and can reduce the severity of the exertion-related symptoms of ME/CFS.

Implications for Rehabilitation:

• Pacing is a strategy which helps patients with ME/CFS limit exertion-related increases in symptomatology.
• Pacing is appropriate for those who operating near or at their maximum level of functioning, and for individuals with neurological and immunological abnormalities.
• Pacing may be offered as part of an individualized, multi-component management programme.

Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document