The Inquiry has been set up to investigate how the NHS and social care in England supports people with long-term conditions. There are over 20 million people in England living with one or more long-term conditions; between them, they account for 70% of health and social care spending.

The MEA submission describes missed opportunities to act on policy recommendations, great difficulty in accessing adequate services and how advice given on managing the condition can be inappropriate and even harmful. And we call for urgent action to be taken on five key points.

Witnesses called today were: Dr Karen Lowton, Senior Lecturer in Ageing and Health, Institute of Gerontology, King’s College London; Professor Alan Maynard OBE, Professor of Health Economics, Department of Health Sciences, University of York; Dr Sue Roberts CBE, Chair, NHS Year of Care Partnerships; and Dr Judith Smith, Director of Policy, Nuffield Trust.

To catch the televised recording of today’s session, click HERE.

HEALTH COMMITTEE INQUIRY INTO THE MANAGEMENT OF LONG TERM CONDITIONS

1 THE ME ASSOCIATION

This is the submission from The ME Association (MEA). The MEA is a national charity that provides information and support for people who have ME (myalgic encephalomyelitis/encephalopathy) and chronic fatigue syndrome (CFS). It also funds research into the cause and management of ME/CFS through the MEA Ramsay Research Fund.

2 SUMMARY

The key points being made in this submission relate to:

* Lack of sound epidemiological data on the prevalence of ME/CFS – which is needed to plan hospital-based services
* Unacceptable delay in diagnosis and misdiagnosis – leading to poor management and poor prognosis
* Lack of undergraduate and postgraduate medical education
* Lack of hospital-based referral services in many parts of the UK resulting in a ‘postcode lottery’
* Lack of hospital-based referral services for children and adolescents – even though ME/CFS is one of the commonest causes of long-term sickness absence from school
* An almost complete absence of hospital-based services and domiciliary services for people with severe ME/CFS
* A NICE guideline on ME/CFS which many people with ME/CFS, and their charity representatives, find unfit for purpose

3 ME/CFS

3:1 Even though the clinical descriptions are different, ME is also known as chronic fatigue syndrome (CFS) and post-viral fatigue syndrome (PVFS). There is a great deal of confusion and debate over nomenclature and definition. For the purpose of this submission, we will refer to the commonly used composite term of ME/CFS.

3:2 ME/CFS is thought to affect at least 250,000 people in the UK.  It affects all age groups, including children and adolescents where it has been identified as one of the commonest causes of long-term sickness absence from school.  The most common age of onset is between 20 and 40 years of age in adults and 11 to 14 in children.

3:3 ME/CFS affects all social classes and ethnic groups.

3:4 ME/CFS is recognised to be a neurological disorder by the World Health Organisation (in section G 93.3 of ICD10) – a classification that is accepted by the Department of Health.

3:5 In the majority of cases the illness affects fit and healthy people who predate the onset of their illness to an acute viral infection, or some other immune system stressor, but then ‘fail to recover’.

3:6 The key symptoms include:

* exercise-induced muscle fatigue and weakness
* post-exertional malaise/symptom exacerbation 
* cognitive dysfunction involving memory, concentration, attention span, information processing
* orthostatic intolerance – difficulty with tasks that require standing
* pain – which can affect muscles, joints or nerves
* on-going infective or flu-like symptoms
* sleep disturbances

3:7 More serious neurological symptoms occur in a minority of people with ME/CFS, especially those at the severe end of the spectrum. These may include blackouts, atypical convulsions, loss of speech, loss of swallowing – which may require assisted feeding.

3:8 Reports into the illness – from the Chief Medical Officer (R1), Medical Research Council (R2), NICE (R3), Royal Medical Colleges (R4) – have all recognised the serious and persisting ill health and disability that is caused by ME/CFS along with an urgent need to provide hospital-based referral services and carry out research into both cause and management.

3:9 Around a quarter of all people with ME/CFS fall into the severely affected category – meaning they are housebound, wheelchair-bound or bed-bound at significant stages in the illness.

3:10 Research into prognosis indicates that while many people with ME/CFS stabilize only a small minority return to normal or near normal levels of health.  Most people experience a significant degree of long-term ill health and disability.

3:11 The annual cost to the UK economy in relation to medical costs, benefit payments and lost revenue has been estimated to be around £3.5 billion (R5).

4 MANAGEMENT

4:1 We would like to bring to the attention of the Health Committee a number of concerns in relation to the management of ME/CFS. Some are shared with other long-term conditions whereas others are unique to ME/CFS.

4:2 These concerns are repeatedly raised by people with ME/CFS. They have also have been raised on numerous occasions in both the House of Commons and the House of Lords, in meetings of the All Party Parliamentary Group on ME, which is Chaired by Annette Brooke MP, in adjournment debates, and in a joint charity forum (Forward ME Group) that is chaired by the Countess of Mar.

4:3 Unfortunately, very little progress has been made in addressing these concerns. And in relation to some aspects of management and NHS service provision the position has become worse.

4:4 The key points that we wish to make cover all points in the patient journey from diagnosis right through to management and support.

5 LACK OF EPIDEMIOLOGICAL DATA

5:1 Health service commissioners do not have meaningful epidemiological data on the prevalence and incidence of ME/CFS – information that is vital for commissioners in order to plan appropriate levels of service provision. Submissions from primary care trusts (PCTs) to the 2010 APPG report on NHS Service Provision (R6) confirmed that they do not have accurate patient numbers. There is therefore an urgent need for a comprehensive and accurate epidemiological study to ascertain the true extent of both diagnosed and undiagnosed ME/CFS.

6 DELAY IN DIAGNOSIS

6:1 Many doctors lack the necessary knowledge and experience to confidently diagnose ME/CFS. Due to the historical background, some doctors still refuse to accept that ME/CFS exists as a clinical entity or are unwilling to use it as a diagnostic label. Consequently, a significant proportion of people with ME/CFS remain undiagnosed, misdiagnosed, or have to wait for an unacceptable period of time before the diagnosis is made.

6:2 A report by the ME Alliance (R7) found that:

* 53% of people with ME/CFS waited for over a year for a diagnosis
* Only 25% were diagnosed within the six month period recommended in the CMO Report
* 45% of children and adolescents waited over a year for diagnosis, despite the recommended timeframe for diagnosis in this group to be three months.

6:3 As a result, people with ME/CFS often receive inappropriate or even harmful advice on management for a considerable period of time – which has a very negative impact on all aspects of management and the overall prognosis.

7 LACK OF MEDICAL EDUCATION

7:1 Much of the problem relating to diagnostic delay and bad initial management relates to the lack of medical education about ME/CFS at both an undergraduate and postgraduate level.

7:2 Organisations that are responsible for medical education – Medical Schools, Royal Colleges, General Medical Council – must therefore take a much more proactive role to ensure that all health professionals in training – doctors, nurses, occupational therapists, physiotherapists – see people with this illness and receive appropriate teaching on clinical assessment and management.

8 HETEROGENEITY OF ME/CFS

8:1 ME/CFS is a heterogeneous condition – both from the point of view of clinical presentation and factors that are involved in causation and perpetuation. Consequently, any management programme must be linked to individual symptoms, severity of symptoms, and any other issues that may be involved in maintaining the illness – there is no place for an inflexible ‘one size fits all’ or an overly centralized approach.

9 LACK OF HOSPITAL-BASED REFERRAL SERVICES

9:1 There is currently a worrying lack of consistency in the way in which hospital-based referral services are organized for patients with ME/CFS, or where there is a possible diagnosis of ME/CFS. This was one of the main conclusions in the report on NHS Service Provision that was prepared by the APPG on ME. The report noted that:

The APPG finds the degree of variation in the availability of and access to services unacceptable. Patient evidence also indicates people want services that are physician led, multidisciplinary, and are situated in locations that are accessible to those with significant mobility problems.

The APPG recommend the DoH takes steps to remedy the variation and ensure that each PCT offers a range of services promptly – a process that should involve meaningful consultation with local patients or patient support groups.

10 LACK OF SERVICES FOR CHILDREN AND ADOLESCENTS

10:1 In relation to children and adolescents the situation is even worse. This is largely due to the fact that most of the existing NHS referral services only provide diagnosis and management to people over the age of 16. The APPG report concluded:

This is unacceptable and can lead to tragic consequences

10:2 The APPG report went on to recommend that all involved should:

Undertake a detailed review of current services for children and adolescents to ensure that all receive adequate care and that all decisions are made in conjunction with personal carers, education authorities and social services where appropriate.

10:3 Despite these very clear recommendations there has been no meaningful action from the vast majority of PCTs since 2010 – and in some locations where specialist referral services have been set up these have later been downgraded or closed. This is clearly an unacceptable situation that must now be addressed by the new Clinical Commissioning Groups.

11 LACK OF SERVICES FOR PEOPLE WITH SEVERE ME/CFS

11.1 As already noted, approximately 25% of people with ME/CFS will be classified as being severely affected at some stage in their illness.

However, this group have great difficulty in accessing hospital-based services, and are not normally offered any form of home-based domiciliary service. Dedicated in-patient beds for the assessment and management of people with severe ME/CFS are almost non-existent. Consequently, many people at the severe end of the spectrum receive no NHS care at all – a situation that is clearly inconsistent with the NICE guideline on ME/CFS.

11.2 The APPG report concluded:

Specialist referral services must ensure that high priority is given to the needs of the severely affected, especially in relation to domiciliary services and in patient facilities for assessment and management

12 THE NICE GUIDELINE ON ME/CFS

12:1 The current (2007) NICE guideline for the management of ME/CFS has been heavily criticised by people with ME/CFS, and the charities, on the grounds that it places far too much emphasis on the use of two behavioural interventions – graded exercise therapy (GET) and cognitive behaviour therapy (CBT) – that are consistently found to be either ineffective or even harmful by a significant proportion of people with ME/CFS. In addition, NICE has failed to recognise the fact that repeated surveys of patient opinion, including the one in the CMO report, have concluded that the most effective and safe form of activity management is a process known as pacing.

12:2 Surveys carried out by the ME/CFS support charities have repeatedly confirmed a high degree of dissatisfaction with the way in which the NHS is almost indiscriminately recommending these two treatments to people with mild or moderate ME/CFS.

12:3 The largest and most recently reported survey carried out by the MEA (R8), which involved over 4,000 respondents, found that in relation to CBT (997 respondents):

2.8% were ‘greatly improved’
23.1% were ‘improved
54.6% were ‘no change’
11.6% were ‘slightly worse’
7.9% were ‘much worse’

12:4 In relation to GET (906 respondents):

3.4% were ‘greatly improved’
18.7% were ‘improved’
21.4% were ‘no change’
23.4% were ‘slightly worse’
33.1% were ‘much worse’

12:5 In relation to pacing (2137 respondents):

11.6% were ‘greatly improved’
59.6% were ‘improved’
24.1% were ‘no change’
3.5% were ‘slightly worse’
1.2% were ‘much worse’

12.6 The NICE guideline also downgrades most aspects of the pragmatic management of key symptoms on the basis that there is an inadequate evidence based guidance of guideline production. This is not the position taken by the 2002 CMO Report into ME/CFS.

12:7 The MEA does not therefore believe that the NICE guideline is fit for purpose and we are very disappointed to learn that a proper review of this guideline with stakeholder input that was planned for 2013 appears to have been cancelled and will now replaced by some form of brief internal review.

13 SUMMARY

13:1 In summary, there are a number of issues relating to the management of ME/CFS that are not being addressed by all those who should be taking action. Most of these issues have already been referred to in reports to government – including the 2002 Chief Medical Officer’s Report and the 2010 report from the APPG on ME on NHS Service Provision. Sadly, there has been a distinct lack of action on behalf of all those responsible to address these concerns. This is clearly unacceptable.

13:2 Action therefore needs to be taken in the following areas:

13:3 An epidemiological study to establish the number of people – adults and children – with ME/CFS, along with the degree of severity. This will enable Clinical Commissioning Groups to plan an appropriate local level of service provision.

13:4 All health professionals should receive a proper period of medical education on the diagnosis and management of ME/CFS during their training. ME/CFS should also form part of continual professional development/education at a postgraduate level.

13:5 Early and accurate diagnosis in primary care, along with appropriate early management, to reduce the chance of a more severe and prolonged illness occurring

13:6 An end to the postcode lottery of NHS referral services – everyone with ME/CFS, adults and children, severely affected, should have access to a local hospital where physician-led specialist input on diagnosis and management can be obtained, where appropriate.

13:7 Physician-led multidisciplinary management programmes should be introduced which recognize that treatment has to be tailored to individual needs based on stage, severity and symptoms

The ME Association would be very willing to give oral evidence to any of the hearings that the Health Committee intends to arrange on this very important topic.

Submission prepared by:

8 May 2013

References:

1 ME/CFS Independent Working Group (2002). A Report of the ME/CFS Independent Working Group – Report to the Chief Medical Officer.

2 MRC website section on research into ME/CFS: http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm

3 NICE clinical guideline 53 (2007). Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy). Diagnosis and management of CFS/ME in adults and children.

4 Royal Colleges of Physicians, Psychiatrists and General Practitioners (1996). Chronic fatigue syndrome: Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners.

5 Bibby J and Kershaw A. How much is ME/CFS costing the country: Report prepared by the Survey and Statistical Research Centre, Sheffield Hallam University for Action for ME 2003, and for Action for ME and The ME Association, 1996.

6 All Party Parliamentary Group on ME (March 2010). Inquiry into NHS service Provision for ME/CFS.

7 ME Alliance (2005) ME Diagnosis: Delay Harms Health. Early Diagnosis: why is it so important?

8 ME Association (2012) Managing my ME – What people with ME/CFS and their carers want from the UK’s health and social services.

ENDS

A quickening in the pace of academic endeavour on behalf of people with ME/CFS is reflected in the Summer edition of ME Essential that has today been delivered to MEA members.

In our quarterly magazine, one can almost feel the bolts blow apart as they release the booster rocket to send Good Ship ‘UK ME/CFS Research Collaborative’ on a mission to make more things happen in ME research.

The magazine covers in words and pictures the launch of the Collaborative that was attended by our royal patron, HRH The Duke of Kent, in London on April 22.

Elsewhere, we’re brought back down to Earth as we present picture coverage of the big ‘All Fall Down’ demo in Westminster that reminded the public of the huge difficulties being faced every day of their lives by people with severe forms of the illness. Well done to MEA trustee Nicki Strong and her son Jamie for organising the day!

And Professor Derek Pheby, a powerhouse in the world of ME research for many years, reveals the horror of what happened to him and his family when he started blowing the whistle on the way the authorities treated them after their son went down with ME 34 years ago, at the age of eight.

Elsewhere, covering the world of daily living (and daily failing through no fault of their own), MEA medical adviser Dr Charles Shepherd delivers his usual range of carefully researched material to help folk make a little more sense out of their lives.

His latest Management File looks at one of the Government’s latest ‘innovations’ on the welfare front, the Personal Independent Payment (PIP) and he writes: “As with DLA, this is a benefit that people with moderate or severe ME/CFS should consider applying for”. PIP is being introduced to replace Disability Living Allowance.

In his always eagerly awaited ‘Ask the Doctor’ column, Dr Shepherd tackles questions on:

* The American refusal to approve Ampligen in the treatment of ME/CFS

* The clinical trial process required to test the efficacy and safety of Rituximab about the promising (but small) Norwegian trial

* Research being done on mitochondrial dysfunction and its role in the development of ME/CFS

* What help might be available to help with necessary building alterations at home?

* Problems with eyelid twitching, which do appear to be more common in people with ME/CFS than in the general population

* Why someone’s GP won’t at least them try the calcium channel blocker drug, Nimodopine

* Whether an unintended consequence of work of the new Research Collaborative might suck funding out of promising, existing biomedical research

* What help is available to help people recover from the nausea that can accompany this illness.

We’ve started a new regular column looking at particular bits of research and where they are taking us.

This time, we look at a Californian study into whether examination of cytokine flare-ups associated with fatigue severity provide evidence of an inflammatory pathology in this illness. And we also comment on an autoimmune study being carried out closer to home in Carshalton.

Our editor covers a snap survey of the views of members of the contents, readability and relevance of the magazine. This was carried out among a randomly-selected 100 readers when the last issue was posted out and it brought in a gratifying 40 responses. Thanks to all those who took the time to help us in this way.

There’s a review of Brian Jarman’s new novel The Missing Room and, among a slew of fundraising stories, we meet the ex-England footballer and his son – currently with Scottish Premier League side Motherwell – who are both raising money for the ME Association. Mark Hateley, Tom and all your family – a great big thank you.

ATOS Healthcare is rejecting requests for home assessments even if a claimant’s GP supports one.

Asked “why Atos Healthcare can refuse a home visit for work capability assessments, even when a GP supports an application,” the Benefits Minister Nelson McCausland said Atos’ own health expert can disregard a GP’s opinion and demand claimants show up at local test centres.

He said: “Claimants requesting a home assessment are required to provide medical evidence to support their request.

“The information provided is considered by a healthcare professional who will decide whether a home visit is necessary whilst home visits are usually only carried out when a claimant is unable to leave their home for any reason, it is apparent that they are able to attend GP/hospital appointments, then they will normally be expected to attend an assessment centre for their medical assessment appointment.”

Tabled on 10 June by Annette Brooke MP (chairman of the All Party Parliamentary Group on ME) with the support of six other MPs, it now has 17 signatures. To read their names, click on the highlighted link in the paragraph below.

It is listed as Commons’ Early Day Motion 212.

In the archaic style of the House, where every sentiment has to be gathered up and contained in a single sentence, the motion is worded:

That this House welcomes the UK Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Research Collaborative; notes that estimates of the prevalence of ME/CFS range from 240,000 to 600,000 patients; further notes that research outcomes on ME/CFS have been limited and fragmented in the past; and supports the Collaborative’s objectives which include promoting the need for world-class research into ME/CFS across all fields, encouraging multidisciplinary research and more researchers to participate and working collaboratively with funders, charities and researchers to increase the financial support for ME/CFS research in the UK.

It’s very similar to an EDM tabled by Mrs Brooke on April 22, the day of the launch of the Research Collaborative, which only managed to secure the signatures of 17 MPs before the close of the last session of Parliament.

Alex Philpott, who has a friend with ME who has had tremendous difficulties in claiming ESA, will want compare to case studies as well as include a lengthy section on what it is like living with the illness.

“My deadline is September 2nd, however i’d really like to get all the information in by August 1st so I can edit it” said Alex.

“As for the length of statements its very much up to the writer, less than 500 words would be ideal, and even if its just a few paragraphs it’ll be great.

“I’d like people to also know that this article is primarily going to be used for a University project, however I might look to getting it published at a later date. In this case people are welcome to use pseudonyms or their real names, I will do whatever suits people and of course, respect their privacy.”

If you would like to help Alex understand more about the subject, please email him at ap465@sussex.ac.uk

Although research is ongoing into nearly all conditions, there are a number which remain more under the radar than others. Health correspondent Julia McWatt and Cathy Owen look at areas which need further investigation.

ME

Myalgic encephalomyelitis, or ME, is a potentially chronic illness experienced by approximately 200,000 people in the UK, making the disease twice as prevalent as multiple sclerosis, systemic lupus and HIV infection. This means that people with severe illness can be counted in thousands – though their voices are rarely heard.

Dr Neil Abbot, research and operations director of ME Research UK, points out that in 2002, a report to the Chief Medical Officer, pointed out that the “severely ill are severely overlooked; just ignored and invisible.”

“That’s still true 11 years later.” he said.

“Funding smallish pilot studies is one thing, but real breakthroughs come at the end of a programme of painstaking work by a specialist group of researchers. Big money will be needed to unravel the causes and find cures for ME.

“Some medical research funding in the UK comes from larger national agencies such as the Medical Research Council and the NHS Research and Development Forum, which allocate funds to established research groups with a track record of success in a certain area, on the basis of a reasonable scientific hypothesis. But getting monies from these larger funders is very difficult.”

CYSTIC FIBROSIS

Ongoing research has been undertaken into treatments and cures into cystic fibrosis but it’s on a much lower scale compared to many other conditions.

In April, the Cystic Fibrosis Trust published a new five-year research strategy, setting out how it will ensure that its investments in cutting-edge research will benefit people with cystic fibrosis.

The trust says the ultimate goal for research into cystic fibrosis is to understand the basic fundamental defect of CFTR. Investments in this transformational research are “long-term and high risk: results do not appear overnight”, it adds.

But the future looks bright for those with the condition. The trust says the cystic fibrosis community may be on the cusp of a significant change towards personalised medicines to treat the condition.

Meanwhile, a life-changing drug will now be available on the Welsh NHS after Health Minister Mark Drakeford went against the recommendation of the All Wales Medicines Strategy Group, which had initially rejected the drug on cost.

Kalydeco is the first licensed drug that treats the fundamental defect in people with the G551D mutation form of cystic fibrosis – a life-threatening genetic disorder which damages the lungs and digestive system.

By correcting the genetic disorder, the drug, also known as Ivacaftor, can extend the lifespan of cystic fibrosis patients from an average of 27 years to an average life length.

The Department for Work and Pensions made this announcement this morning, in the following email.

Professor Harrington conducted the first three annual reviews of Work Capability Assessment, with changes starting to be made to the way that Employment and Support Allowance is assessed. Professor Harrington involved outside experts and charity representatives, including MEA medical adviser Dr Charles Shepherd on behalf of the Forward ME Group.

Dear All

I am writing to you because you have previously expressed an interest in the Independent Review of the Work Capability Assessment (WCA). The Fourth Independent Review is being led by Dr Paul Litchfield and will report by the end of 2013.

This note gives you advance notification of the Call for Evidence which Dr Litchfield will launch on 1 July.

It will be published at www.dwp.gov.uk/wca-review and will run until 27 August. It will be one of several methods used to gather information during the review and is aimed at organisations and individuals who have information on how the WCA is operating and further changes that may be needed to improve the process.

This is the fourth of five independent reviews and Dr Litchfield is particularly interested in new evidence that will help improve the assessment. We wanted to give you advance notice of the areas of particular interest for this call for evidence to help with your planning for collecting evidence over the coming weeks. The call for evidence will focus on:

· How effectively the WCA identifies people who are fit for work, who have limited capability for work, or who have limited capability for work-related activity;
· The impact of earlier Independent Reviews;
· The way mental health conditions are considered in the WCA; and
· Biopsychosocial factors that influence capability for work.

As part of the Call for Evidence, Dr Litchfield will be hosting some seminars during the first two weeks of August. We will confirm details of the seminars and how to book your place when the Call for Evidence opens.

Please forward this email to others with an interest in the Independent Review. If you do not want to receive any more emails about the Independent Review, please advise us and we will remove you from our contact list.

Regards,

WCA Independent Review Team
Email WCA.EVIDENCE@DWP.GSI.GOV.UK

Myalgic encephalomyelitis/chronic fatigue syndrome: Review of history, clinical features, and controversies

Nigel Speight
Consultant Paediatrician, Durham, United Kingdom

Abstract

Myalgic encephalomyelits/chronic fatigue syndrome (ME/CFS) has been both a medical mystery and a source of controversy in Western medicine for over 50 years. This article reviews the major historical developments over this period, describes the clinical pattern and spectrum of severity, and then explores the current major controversies surrounding the subject.

From Frontiers in Physiology, 30 May 2013.

Multiscale analysis of heart rate variability in non-stationary environments

Jianbo Gao(1,2), Brian M. Gurbaxani(3), Jing Hu(1), Keri J. Heilman(4), Vincent A. Emanuele II(3), Greg F. Lewis(4,5), Maria Davila(4), Elizabeth R. Unger(3) and Jin-Mann S. Lin(3)
1 PMB Intelligence LLC, West Lafayette, IN, USA
2 Mechanical and Materials Engineering, Wright State University, Dayton, OH, USA
3 Chronic Viral Diseases Branch, Division of High Consequence Pathogens and Pathology, Centers for Disease Control and Prevention, Atlanta, GA, USA
4 College of Medicine, Brain-Body Center, University of Illinois, Chicago, IL, USA
5 Research Triangle Institute, Raleigh, NC, USA

Abstract

Heart rate variability (HRV) is highly non-stationary, even if no perturbing influences can be identified during the recording of the data. The non-stationarity becomes more profound when HRV data are measured in intrinsically non-stationary environments, such as social stress.

In general, HRV data measured in such situations are more difficult to analyze than those measured in constant environments. In this paper, we analyze HRV data measured during a social stress test using two multiscale approaches, the adaptive fractal analysis (AFA) and scale-dependent Lyapunov exponent (SDLE), for the purpose of uncovering differences in HRV between chronic fatigue syndrome (CFS) patients and their matched-controls.

CFS is a debilitating, heterogeneous illness with no known biomarker. HRV has shown some promise recently as a non-invasive measure of subtle physiological disturbances and trauma that are otherwise difficult to assess. If the HRV in persons with CFS are significantly different from their healthy controls, then certain cardiac irregularities may constitute good candidate biomarkers for CFS.

Our multiscale analyses show that there are notable differences in HRV between CFS and their matched controls before a social stress test, but these differences seem to diminish during the test. These analyses illustrate that the two employed multiscale approaches could be useful for the analysis of HRV measured in various environments, both stationary and non-stationary.

From Comprehensive Psychiatry, 5 June 2013

The role of neuroticism, perfectionism and depression in chronic fatigue syndrome. A structural equation modeling approach

Sergi Valero(a), Naia Sáez-Francàs(a), Natalia Calvo(a), José Alegre(b), Miquel Casas(c,a),
(a) Department of Psychiatry, Hospital Universitari Vall d’Hebron, CIBERSAM, Universitat Autònoma de Barcelona, Passeig de la Vall d’Hebron 119–129, 08035 Barcelona, Catalonia, Spain
(b) Department of Internal Medicine, Hospital Universitari Vall D´Hebron, Institut de Recerca (VHIR), Universitat Autònoma de Barcelona, Passeig de la Vall d’Hebron 119–129, 08035 Barcelona, Catalonia, Spain
© Department of Psychiatry and Legal Medicine, Universitat Autònoma de Barcelona, Campus de Bellaterra s/n 08193, Bellaterra, Catalonia, Spain

Abstract

OBJECTIVE

Previous studies have reported consistent associations between Neuroticism, maladaptive perfectionism and depression with severity of fatigue in Chronic Fatigue Syndrome (CFS). Depression has been considered a mediator factor between maladaptive perfectionism and fatigue severity, but no studies have explored the role of neuroticism in a comparable theoretical framework. This study aims to examine for the first time, the role of neuroticism, maladaptive perfectionism and depression on the severity of CFS, analyzing several explanation models.

METHODS

A sample of 229 CFS patients were studied comparing four structural equation models, testing the role of mediation effect of depression severity in the association of Neuroticism and/or Maladaptive perfectionism on fatigue severity.

RESULTS

The model considering depression severity as mediator factor between Neuroticism and fatigue severity is the only one of the explored models where all the structural modeling indexes have fitted satisfactorily (Chi square = 27.01, p = 0.079; RMSE = 0.047, CFI = 0.994; SRMR = 0.033). Neuroticism is associated with CFS by the mediation effect of depression severity. This personality variable constitutes a more consistent factor than maladaptive perfectionism in the conceptualization of CFS severity.

ABBREVIATIONS

CFS, Chronic fatigue syndrome;
RMSE, Root Mean Squared Error;
CFI, Confirmatory Fit Index;
SRMR, Standardized Root Mean Residual;
FIS, Fatigue Impact Scale;
U-FIS, Unidimensional Fatigue Impact Scale;
ZKPQ, Zuckerman–Kuhlman Personality Questionnaire;
MPS-F, Frost Multidimensional Perfectionism Scale;
HADS, Hospital Anxiety–Depression Scale

From the European Journal of Pediatrics, June 2013

Clinical Practice: Chronic fatigue syndrome

Charlotte L. Werker(1), Sanne L. Nijhof(1), Elise M. van de Putte(1,2)
1) Department of Pediatrics, Wilhelmina Children’s Hospital, University Medical Centre, Utrecht, The Netherlands.
2) Department of Pediatrics, University Medical Centre, Utrecht≤ Office KE 04.133.1, Postbox 85090, 3508 AB Utrecht, The Netherlands.

Abstract

The diagnosis chronic fatigue syndrome (CFS) was conceptualized in the mid-1980s. It is a clinically defined condition characterized by severe and disabling new onset fatigue with at least four additional symptoms: impaired memory or concentration, sore throat, tender cervical or axillary lymph nodes, muscle pain, multi-joint pain, new headaches, unrefreshing sleep or post-exertion malaise.

Chronic fatigue syndrome in adolescents is a rare condition compared to symptomatic fatigue. The estimated prevalence of adolescent CFS ranges between 0.11 and 1.29 % in Dutch, British, and US populations.

Diagnosis of the chronic fatigue syndrome is established through exclusion of other medical and psychiatric causes of chronic fatiguing illness. Taking a full clinical history and a full physical examination are therefore vital.

In adolescence, CFS is associated with considerable school absence with long-term detrimental effects on academic and social development. One of the most successful potential treatments for adolescents with CFS is cognitive behavioural therapy, which has been shown to be effective after 6 months in two thirds of the adolescents with CFS. This treatment effect sustains at 2–3-year follow-up.

In conclusion, the diagnosis CFS should be considered in any adolescent patient with severe disabling long-lasting fatigue. Cognitive behavioural therapy is effective in 60–70 % of the patients. Prompt diagnosis favours the prognosis.

From the Journal of Clinical Rheumatology, 5 Junen 2013 [Epub ahead of print]

Cognitive performance is of clinical importance, but is unrelated to pain severity in women with chronic fatigue syndrome.

Ickmans K, Meeus M, Kos D, Clarys P, Meersdom G, Lambrecht L, Pattyn N, Nijs J.
Pain in Motion Research Group (PIM), Department of Human Physiology, Faculty of Physical Education and Physiotherapy, Vrije Universiteit Brussel, Building L, Pleinlaan 2, 1050, Brussels, Belgium.

Abstract

In various chronic pain populations, decreased cognitive performance nis known to be related to pain severity. Yet, this relationship has not been investigated in patients with chronic fatigue syndrome (CFS).

This study investigated the relationship between cognitive performance and (1) pain severity, (2) level of fatigue, and (3) self-reported symptoms and health status in women with CFS.

Examining the latter relationships is important for clinical practice, since people with CFS are often suspected to exaggerate their symptoms. A sample of 29 female CFS patients and 17 healthy controls aged 18 to 45 years filled out three questionnaires (Medical Outcomes Study 36-Item Short-Form Health Survey, Checklist Individual Strength (CIS), and CFS Symptom List) and performed three performance-based cognitive tests (psychomotor vigilance task, Stroop task, and operation span task), respectively.

In both groups, pain severity was not associated with cognitive performance. In CFS patients, the level of fatigue measured with the CFS Symptom List, but not with the CIS, was significantly correlated with sustained attention. Self-reported mental health was negatively correlated with all investigated cognitive domains in the CFS group.

These results provide evidence for the clinical importance of objectively measured cognitive problems in female CFS patients. Furthermore, a state-like measure (CFS Symptom List) appears to be superior over a trait-like measure (CIS) in representing cognitive fatigue in people with CFS.

Finally, the lack of a significant relationship between cognitive performance and self-reported pain severity suggests that pain in CFS might be unique.

From the Journal of Psychosomatic Research, 3 June 2013

Differences in physical functioning between relatively active and passive patients with Chronic Fatigue Syndrome

Desirée C.W.M. Vos-Vromans, Ivan P.J. Huijnen, Albère J.A. Köke, Henk A.M. Seelen, et al.
Revant Rehabilitation Centre Breda, Brabantlaan 1, 4817 JW Breda, The Netherlands

Abstract

OBJECTIVE

According to the Cognitive behavioral therapy (CBT) protocol for patients with Chronic Fatigue Syndrome (CFS), therapists are advised to categorize patients in relatively active and passive patients. However, evidence to support the differences in physical functioning between these subgroups is limited. Using the baseline data from a multicentre randomized controlled trial (FatiGo), the differences in actual and perceived physical functioning between active and passive patients with CFS were evaluated.

METHODS

Sixty patients, who received CBT during the FatiGo trial were included. Based on the expert opinion and using the definitions of subgroups defined in the CBT protocols, the therapist categorized the patient. Data from an activity monitor was used to calculate actual physical functioning, physical activity, daily uptime, activity fluctuations and duration of rest during daily life. Perceived physical functioning was assessed by measuring physical activity, physical functioning and functional impairment with the Checklist Individual Strength, Short Form-36 and Sickness-Impact Profile 8.

RESULTS

Relatively active patients have a significantly higher daily uptime and show significantly less fluctuations in activities between days. Passive patients experience a significantly lower level of physical functioning and feel more functionally impaired in their mobility. However, no significant differences were found in the other actual or perceived physical functioning indices.

CONCLUSIONS

A clear difference in actual and perceived physical functioning between relatively active and passive patients with CFS as judged by their therapists could not be found. Future research is needed to form a consensus on how to categorize subgroups of patients with CFS.

You need either a Facebook account or a Google email address and then all you need to do is click on THIS LINK followed by clicking on the MEA logo before voting. We’re currently in 10th place.

The higher up the ratings you push us, the better the chance of scooping the £2,000 top prize. There’s also £1,000 for second place or a share of the remaining £2,000 in the prize pot – to be split equally among the next eight runners-up.

Alternatively, you may prefer to vote by post. Send a postcard including your name, address and the charity or good cause you are voting for, to: The Big Break, 131-151 Great Titchfield Street, London W1W 5BB.

Dr Nigel Speight, paediatric medical adviser to the ME Association, has written a short, three-page review for a Saudi publication of the history of ME/CFS, its clinical features and the controversies that allowed “whole generations of doctors in the UK to deny the existence of ME as an organic entity”.

His article appears in the first edition – Volume 1, Issue 1 – of the Saudi Journal of Medicine and Medical Sciences, which was published online on 3 June 2013. The full article is available to read HERE.

It starts off with a review of the classic studies by Dr Melvin Ramsay (one of the founders of the ME Association) of the epidemic that took place at the Royal Free Hospital in London in 1955, which was later written off as an episode of “mass hysteria” by the psychiatrists, Colin McEvedy and Bill Beard.

“Attempts were made to abolish the term ME, and to replace it with the term “Chronic Fatigue Syndrome”, and this has been vigorously opposed by the patient organisations. Currently, the terms are used synonymously in the UK”, writes Dr Speight.

“In the USA, the term “Chronic Fatigue and Immune Deficiency Syndrome” (CFIDS) has been used although transatlantic thinking is now more in favour of immune activation as part of the pathology.

“In 2002, a Working Party set up by the Chief Medical Officer Sir Kenneth Calman concluded that ME was a “genuine” disease, and that “patients should not be dismissed as malingerers.” Despite this landmark, many patients in the UK still encounter disbelief and rejection by their medical attendants.

“Subsequently, the development of guidelines from the National Institute of Clinical Excellence (NICE) in 2006 put such stress on the efficacy of Cognitive Behavioural Therapy (CBT) that the pendulum has swung somewhat back toward the psychiatric viewpoint (in my view most unfortunately).”