BMJ Editorial: Chronic fatigue syndrome or myalgic encephalomyelitis NICE guidelines

This BMJ Editorial, published today, has been co-authored by Peter Denton White (Barts CFS Clinic), Maurice Murphy (Barts), Jill Moss, AYME, George Armstrong, co-chair, AfME and Sir Peter Spencer, CEO, AfME. Also published in the BMJ, today, is an associated article by R Baker, chair of the NICE guideline group and E J Shaw, deputy chief executive, National Collaborating Centre for Primary Care.

AYME and AfME have already issued press releases following the publication of NICE guidance, on 22 August.

We know which way AYME and AfME have jumped.

It will be very interesting, indeed, to see how the ME Association and Jane Colby are going to respond to the final guideline by way of initial statements or press releases and in any detailed appraisals they plan to issue.

BMJ 2007;335:411-412 (1 September), doi:10.1136/bmj.39316.472361.80

Editorials

Chronic fatigue syndrome or myalgic encephalomyelitis, NICE guidelines pave the way forward for patients and doctors

The first 150 words of the full text of this article appear below.

The uncertainty inherent in making a diagnosis of chronic fatigue syndrome (CFS) is reflected by the variety of names (such as myalgic encephalomyelitis; ME) it has been given. The names reflect the hope that such labels can impose some certainty where little exists. Many doctors are reluctant to make a diagnosis of CFS, with half not even believing it exists.1 The consequences of this uncertainty and reluctance have been that patients hear mixed messages and often receive poor, if any, care.2 It is therefore a welcome relief that the National Institute for Health and Clinical Excellence (NICE) has just published clinical guidelines on the diagnosis and management of this disease.3 In this week’s BMJ, Baker and Shaw summarise the guidelines.4

How has the development of these guidelines come about? Eleven years ago, three UK royal colleges agreed that CFS/ME existed as an independent diagnosis and that treatments were possible.5 . . .

[Full text of this article requires subscription]

Peter White, professor of psychological medicine1, Maurice Murphy, consultant physician1, Jill Moss, founding chair2, George Armstrong, co-chair3, Sir Peter Spencer, chief executive officer3

1 Barts and the London NHS Trust and Queen Mary School of Medicine and Dentistry, St Bartholomew’s Hospital, London EC1A 7BE, 2 Association of Young People with ME, PO Box 5766, Milton Keynes, MK10 1AQ, 3 Action for ME, Bristol BS1 6BY

p.d.white@qmul.ac.uk

Related Article
Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance R Baker and E J Shaw

BMJ 2007 335: 446-448. [Extract] [Full Text]
 

 

BMJ 2007;335:446-448 (1 September), doi:10.1136/bmj.39302.509005.AE

Practice

Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance

R Baker, chair of the guideline group1, E J Shaw, deputy chief executive2

1 Department of Health Sciences, University of Leicester, Leicester LE1 6TP , 2 National Collaborating Centre for Primary Care, Royal College of General Practitioners, London E1 8EW

Correspondence to: E J Shaw cfs_me@rcgp.org.uk

The first 150 words of the full text of this article appear below.

Why read this summary?

Data from other countries indicate that chronic fatigue syndrome (also known as myalgic encephalomyelitis or myalgic encephalopathy) (CFS/ME) is relatively common (affecting at least 0.2-0.4% of the population), although good epidemiological data for the United Kingdom are lacking. Many different potential aetiologies for CFS/ME have been investigated, including neurological, endocrine, immunological, genetic, psychiatric, and infectious, but the aetiology cannot yet be fully explained. CFS/ME can cause prolonged illness and disability and substantially affect patients and their families. Although most patients have mild or moderate symptoms, some have severe CFS/ME and are housebound or even unable to move from their bed. Uncertainties about diagnosis and management may exacerbate the impact of symptoms, and patients often encounter delays in diagnosis and difficulty accessing information, support, and potentially helpful therapies.1 This article summarises the most recent guidance from the National Institute for Health and Clinical Excellence (NICE) on diagnosing and managing this condition.2

Recommendations

. . . [Full text of this article]

General principles
Presentation
Diagnosis
General management and referral
Specialist care
Overcoming barriers
Further information on the guidance
Methods

Related Article

Chronic fatigue syndrome or myalgic encephalomyelitis

Peter White, Maurice Murphy, Jill Moss, George Armstrong, and Sir Peter Spencer

BMJ 2007 335: 411-412. [Extract] [Full Text]

This article has been cited by other articles: (Search Google Scholar for Other Citing Articles)

White, P., Murphy, M., Moss, J., Armstrong, G., Spencer, S. P. (2007). Chronic fatigue syndrome or myalgic encephalomyelitis. BMJ 335: 411-412

Read all Rapid Responses to this article
 

Comments on the NICE Guideline on “CFS/ME”: Margaret Williams

Comments on the NICE Guideline on “CFS/ME”

Margaret Williams
29 August 2007

Introduction

The National Institute for Health and Clinical Excellence (NICE) was set up in 1999 and is funded by the Department of Health, to whom it as accountable. It is not therefore “independent” of the machinery of State.

Its “consultation” processes are, according to Christopher Booker, merely an empty exercise: the Government and its bodies pretend to “consult” those affected by their actions, then carry on doing exactly what they intended in the first place. In other words, the “consultation” period is a farce, as the Government is not remotely interested in looking at the evidence (Sunday Telegraph, 20th June 2004).

As noted by Peter Kemp, topics for the Institute’s work programme are selected by the Department of Health, but once a topic has been referred, the development and communication of the subsequent advice is entirely the responsibility of the Institute. As Kemp noted: “This seems to suggest that NICE can be told what to do. This does not sound like independence in the true sense of the word. The remit is so heavily loaded that I believe a truly independent institute would reject it out of hand. The remit is effectively telling NICE what to recommend; ie. ‘management of adjustment and coping’ and ‘rehabilitation strategies’. NICE have been told what to recommend for people with CFS/ME and judging from their draft guideline, have complied” (ME/CFS and FM Information Exchange Forum, 21st November 2006).

It was on 23rd February 2004 that the Department of Health and the Welsh Assembly formally requested NICE to prepare a clinical and service guideline. The remit was:

“To prepare for the NHS in England and Wales, guidance on the assessment, diagnosis, management of adjustment and coping, symptom management, and the use of rehabilitative strategies geared towards optimising function and achieving greater independence for adults and children of CFS/ME”.

On 29th September 2006 NICE issued a draft Guideline on “CFS/ME” for consultation. There were many serious problems with the draft Guideline, starting with incorrect and confusing information about the way in which responses to the consultation Questionnaire should be submitted. The problems of terminology and classification were not addressed; some Guideline Development Group members had a published track record of supporting the psychosocial model of “CFS/ME” favoured by the Wessely School; in clear contravention of the AGREE Instrument (see below), the vested interests of Guideline Development Group members were not declared (including the fact that one GDG member had spent 15 years working for the medical insurance industry and was Chief Medical Officer for a major medical insurance company); due to the narrow confines of the remit, there was a failure to heed the biomedical evidence that disproved the psychosocial model of ME/CFS; the names of the advisers to the Guideline Development Group were withheld (but were later confirmed by Carole Forbes, Systematic Review Project Manager at the CRD, to be the same people who had advised the Systematic Review team at the CRD, which included Simon Wessely, Anthony Pinching and Chris Clark from AfME — from which Clark resigned in March 2006); the Questionnaire contained a series of “misprints” relating to questions 29-61, making a nonsense of responses to those questions and meaning that answers to over one third of the questions were likely to be erroneous; the way in which answers were to be provided was changed in such a subtle way as to make it unlikely that patients with cognitive impairments would notice, thereby potentially achieving results that respondents did not intend; out of an ME/CFS UK population of between 0.2 to 0.4% (ie. up to 240,000 people), only 399 questionnaires were sent out and out of these, only 219 were completed, rendering such a tiny and unrepresentative response easy for NICE to ignore statistically; the Key Questions upon which the questionnaire was based (in order to fit the NICE scope, the scope being the document that set out what the Guideline will cover) seemed designed to preclude anything other than a psychosocial model; NICE relied upon the Systematic Review provided for it by the CRD at York, when that Systematic Review had already been exposed as flawed, even to the extent that it may have contained research misconduct in that it had deleted previously published evidence in order to cast the management regime favoured by the Wessely School in a good light.

Most importantly, NICE failed to conform to the AGREE Instrument (The Appraisal of Guidelines for Research and Evaluation) which requires that NICE is obliged to give equal weight to three main sources of data: “evidence-based” medicine, usually deemed to be random controlled trials (RCTs); the opinion and experience of physicians with expertise in the area, and the opinion and experience of the patient group for whom the Guideline is intended. This did not happen in its draft Guideline on “CFS/ME”.

Despite the fact that the UK medical defence unions have advised doctors that exercise regimes (which form part of a cognitive behavioural therapy regime) must be prescribed with just as much caution as pharmacological interventions, it seemed that NICE may have overlooked the implications of this advice: in its Draft Guideline on “CFS/ME”, the only recommended management regime was cognitive behavioural therapy (CBT), including graded exercise therapy (GET) and, for the severely affected, “Activity Management”.

Click on the link below for the full response from Margaret Williams in Word format

Word doc Comments on the NICE Guideline on “CFS/ME”  

NICE CFS/ME guideline: Media coverage round-up One

NICE CFS/ME guideline: Media coverage round-up One

The publication of the exceedingly nasty NICE CFS/ME guideline has received little media attention:

Daily Telegraph, UK
24 August 2007

Treat ME more seriously, doctors ordered

Doctors have been told to take ME – a debilitating condition once dismissed as “yuppie flu” – seriously and not just tell patients to go to the gym.

 

Patients with ME should be given individual plans to help them manage their condition, guidance from the National Institute for Health and Clinical Excellence said yesterday.

 

People with mild or moderate ME should be offered graded exercise therapy (GET) and psychotherapy in the form of cognitive behavioural therapy (CBT)…

Read full article

Daily Mail, UK
22 August 2007

Doubting doctors are ordered to take ME patients seriously

By Jeremy Hope

The Health Service has issued the first guidance on how to treat ME sufferers after being urged to bring the condition ‘out of the wilderness’.

 

It aims to redress years of prejudice against those with chronic fatigue syndrome – the term by which ME is now often known – who were told the condition was ‘all in the mind’.

 

The NHS guidelines instruct doctors not to tell patients to ‘go to the gym’ as this could make them worse.

 

Although those suffering from the condition can benefit from gentle exercise, they should not be coerced into it.

 

Family doctors are also advised to refer children with symptoms of the disorder to a paediatrician within six weeks.

 

The guidelines state that a diagnosis should be made within three months in children and four months in adults.

 

The document from the National Institute of Health and Clinical Excellence comes after years of controversy surrounding the diagnosis and treatment of chronic fatigue…

Read full article

A response from Dr John H Greensmith in the Letters section to the Daily Mail article:

Some doctors are already able to recognise and diagnose M.E. (Myalgic Encephalomyelitis ), as a serious discrete neurological illness, clinically but those who do not believe that it is any more than chronic fatigue, or think it is ‘all in the mind’, for lack of scientific evidence, won’t believe it until they have got a definitive diagnostic test for M.E.

 

But we are spending the millions of pounds that could fund the research to do this on providing two management strategies, one of which, Cognitive Behaviour Therapy (CBT) does no lasting good for M.E. suffers and the other, Graded Exercise Treatment (GET), which may do lasting, irreversible, harm to some.

 

The NICE (National Institute for Health and Clinical Excellence) report with its lax terminology and its reliance on questionable experimental designs and interpretations, produced by a disproportionate number of advisers with a psychiatric background – already in favour of and using these treatments – was much too narrow in its remit to make any material difference to M.E. patients.

 

M.E. sufferers will not, in practice, be treated as equal partners in the process and will not realistically be able to refuse the authority of the therapist if they ever feel uncomfortable or worse.

 

Things will not change until the biomedical research supported by appropriate funding, comes first.

 

Yours sincerely

Dr John H Greensmith
ME Free For All 

Western Daily Press, UK
29 August 2007

By Aleisha Scott

ME Guidelines a step forward but not enough

Sufferers of ME are angry that the Government’s health watchdog has failed to recognise the debilitating condition as neurological.

 

The National Institute of Clinical Excellence (Nice) has issued new guidelines to doctors on how they should treat Myalgic Encephalomyelitis.

 

The guidance, which has taken three years to compile, says healthcare professionals should take the illness seriously.

 

But it does not support the World Health Organisation’s view that it is a neurological condition.

 

Instead, Nice advocates psychotherapy treatment or exercise programmes that ME sufferers say do not help the illness, which affects 240,000 people in the UK…

Read full article

Brian Ashworth: The Orchard Centre, Bilston, West Midlands

Have you used the services of Brian Ashworth, The Orchard Centre, Bilston, West Midlands?

Since 1994, Brian and Jeanie Ashworth of The Orchard Centre, Bilston, West Midlands have been operating in the area of representation for benefits and benefits appeals, largely for the ME and CFS patient community.  Mr Ashworth has also involved himself in educational casework, child protection and MSbP casework and in other cases where there has been involvement of social services or other agencies. Mr Ashworth is also known to involve himself in immigration casework and undertake work of a general legal nature*; he also describes himself as a “private health practitioner”.

*Mr Ashworth is not a solicitor, barrister or any form of legal executive. Since 2006, he has also operated under the name of B & J Legal Services.

Over the past three years, we have been gathering information about the activities of The Orchard Centre.  If you have used any of the services provided by Mr and Mrs Ashworth, at any time, and have had concerns about the quality of service you have received and would like to discuss your experiences with us, please contact us, in confidence.

Mr and Mrs Ashworth are known to operate or have operated in the past under the following “Trading As” names, none of which are registered companies, registered charities, registered charitable organisations or any form of voluntary organisation:

B & J Legal Services
The Orchard Centre
The Orchard M.E. Centre
The Orchard M.E. Centre Benefits, Pensions and Appeals Service
The Orchard M.E. Centre Benefits & Appeals Service
The Orchard M.E. Centre Benefits & Appeals Advice
The Orchard Centre Advocacy
The Orchard Centre for Fatigue Illnesses
The Orchard Centre for Fatigue Illnesses Benefits and appeals advice
The Orchard Fatigue Centre
The Orchard Centre Study of Fatigue Illnesses
The Orchard Centre Study of Fatigue Illnesses Education Service
The Orchard Study
The Orchard M.E. Study
The Orchard Study Centre
The Orchard Trust
The Orchard Centre for Training Coun [sic]
The Orchard Centre Services
The Orchard Centre Services Appeals, Pensions & Legal
The Orchard Centre Services Appeals & Benefits Education & Legal Advice

For further information click here or click on The Orchard Centre tab at the top of the web page.

Suzy Chapman & Ciaran Farrell
Email Suzy Chapman

or contact

Ciaran Farrell on Tel/FAX: 0207 485 3404

NICE CFS/ME guideline: AYME press release

The Association of Young People with ME (AYME) issued this press release, yesterday.  The full guideline is being analysed by AYME’s Chief Executive Officer and a commentary is to be published in due course on the AYME website.

NICE press release   
22nd August 2007

The largest ME/CFS children’s charity welcomes today’s publication of the NICE Guidelines which will provide leverage for more services to be offered to patients.

Today it’s estimated that only one in ten children in England receives treatment for ME/CFS. The Association of Young People with ME (AYME) says the guidelines now put the onus on Primary Care Trusts to provide quality services administered by professionals with experience of ME/CFS.

“If the NICE guidelines are undermined and discounted, PCTs can use this as a reason not to provide the funding that is so desperately needed. Patient services will disappear or remain non-existent,” said Chief Executive of the Association of Young People with ME, Mary-Jane Willows.

ME/CFS services have already disappeared from Hertfordshire and London’s St Thomas Hospital because funding was withdrawn. Other services across the country are also facing budget cuts.

“We will be doing patients a great disservice if we don’t support these guidelines,” added Mrs Willows. “By their nature, consensus documents will not suit everyone. But if the guidelines are used in a positive way they will help us to retain existing ME/CFS services, without which thousands of newly diagnosed patients would go undiagnosed and untreated. This is the problem that has plagued the ME/CFS community to date.”

For more information or to speak to a young person with ME/CFS call the AYME Press Office on 01908 379737 or 07977 060 553 or 0781 6989 067.

Notes to Editors

AYME (pronounced aim) stands for the Association of Young People with ME.

It is a national, award-winning registered charity dedicated to providing support and information to the estimated 25,000 young people living with ME/CFS in the UK and their families. Membership is free for children and young people with ME aged 5 to 25 years.

How did it begin? AYME began ten years ago as a grass-roots self-help support group and today has grown into the largest ME children’s charity in the UK with over 70 services run by 300 member volunteers who are young people with ME/CFS, building confidence and skills and the opportunity to lead a fulfilling life when they recover.

Ends

BRAME: Personal Response from Tanya Harrison to NICE guideline on CFS/ME

BRAME Blue Ribbon for the Awareness of ME

Personal Response to the NICE Guidelines on ME/CFS

As you are all now aware, I have resigned from the NICE Guideline Development Group (GDG) on ME/CFS (August 2007). I originally requested that a statement went in the guidelines “Tanya felt unable to agree with the content of these guidelines”, as I felt that I could not sign up to the guidelines, but did not want to resign, as I was, and still am, willing to be part of future re.writes/redrafts, which I feel are inevitable. However this option was not available to me, and therefore I felt that I must resign, as I could not sign up to the guidelines. I hope that you will understand that I was not able to make my decision known until today, the date of publication for the guidelines, as I have always adhered to the confidentiality that was expected from being a member of the GDG.

AfME statement: NICE CFS/ME guideline amended

NICE guideline amended (press release)
22 August 2007

National Institute for Health and Clinical Excellence (NICE) has published its guidelines on the diagnosis and management of M.E. (myalgic encephalomyelitis / encephalopathy) or chronic fatigue syndrome today, 22 August 2007.

The guideline is published in full, summary and quick reference form and the full guideline (488 pages) is still being analysed. A detailed commentary will be published in due course.

In responding to the shorter NICE summary and reference guide, the trustees of Action for M.E. recognise that the Guideline Development Group (GDG) has taken account of much of the patient evidence supplied during the public consultation on the draft guideline, published last September. This is welcome, as is the emphasis on shared decision-making between patients and healthcare professionals and working in partnership.

From the outset the guideline states, as a key priority, that healthcare professionals should acknowledge the reality and impact of the illness and its symptoms.

The trustees are disappointed to note that the guidance still places undue emphasis on two treatments – cognitive behavioral therapy (CBT) and graded exercise therapy (GET) – for which the underlying evidence is inadequate and unrepresentative. Many patients have reported little or no benefit from CBT and others have experienced seriously adverse effects from GET.

They are also disappointed that the GDG could not agree to recognise the World Health Organisation’s classification of M.E. as a neurological illness.

In addition, the summary guideline does not convey or reflect the impact which the illness can have on the lives of those people who are most severely affected by M.E.

Nevertheless the trustees feel that the guidelines represent an opportunity to drive forward improvements in NHS services so long as the right training is given to healthcare professionals and especially GPs. Only this will give them the confidence they need to diagnose the illness and to work in partnership with patients to determine the most appropriate treatment for each individual.

George Armstrong, Chair of trustees, said:

“This guideline could be a landmark in the mainstreaming of M.E. as a legitimate illness. Properly implemented, it should help GPs on the front line to reach a diagnosis and identify pathways of care, treatment and support.

“We will use our connections with patients to monitor rigorously the implementation of the guidelines. As a critical partner we will also work with the NHS to ensure that people with M.E. will receive the most positive and effective forms of care, tailored to their own specific needs and preferences.”

Sir Peter Spencer, Chief Executive of Action for M.E., added:

“When the draft guideline was published last September, Action for M.E. and other patient groups were united in their belief that CBT and GET should not be recommended as ‘treatments of first choice.’ NICE has responded by removing this phrase but CBT and GET remain. As a result, aspects of the guideline are problematic.”

The guideline acknowledges that more research is needed into the causes of the illness and Action for M.E. calls upon the Government to make a serious investment in research into the aetiology and pathogenesis (development) of this debilitating illness. Only then can the most effective treatments be identified and tested.

Action for M.E. and other patient organisations can play a vital role in implementing the guideline by providing healthcare professionals with information resources and patient experiences which will help to make their training meaningful and patient centred.

The potential for the NICE guidelines to improve practice can only be fully realised if services for people with M.E. are fully funded and we will campaign energetically for a greater level of investment, particularly in those areas that pioneer new models of service delivery that address the position of children and the most severely affected.

AYME, the Association of Young People with M.E. has also welcomed the guideline and a statement will be appearing on their website (www.ayme.org.uk) shortly.

The NICE guideline, Quick Reference Guide, Full guideline and information on ‘Understanding NICE guidance’ can be downloaded from www.nice.org.uk/CG053

It is also possible to order paper copies of the Quick Reference Guide and ‘Understanding NICE guidance’ by phoning the NHS response line on 0870 1555 455 and quoting N1302 (quick reference guide) or N1303 (Understanding NICE guidance).

NICE CFS/ME guideline Stakeholder Comments and GDC responses

NICE CFS/ME guideline Stakeholder Comments

Chronic fatigue syndrome / Myalgic encephalomyelitis: stakeholders comments and GDG responses

NICE version – table of comments  22/08/2007

Chapter 1 – table of comments  22/08/2007

Chapter 2 – table of comments  22/08/2007

Chapter 3 – table of comments  22/08/2007

Chapter 4 – table of comments  22/08/2007

Chapter 5 – table of comments  22/08/2007

Chapter 6 – table of comments  22/08/2007

Chapter 7 – table of comments  22/08/2007

General – table of comments  22/08/2007

Appendices - table of comments  22/08/2007

NICE guideline on CFS/ME published

The NICE clinical practice guideline on chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME) is published today, 22 August.

All versions of the guideline are available electronically from the NICE website.
A patient version is also available in hard copy from the NHS Response Line on 0870 1555 455

Download the NICE CFS/ME guideline

Chronic fatigue syndrome / Myalgic encephalomyelitis
Chronic fatigue syndrome / Myalgic encephalomyelitis (or encephalopathy); diagnosis and management

Guidance type: Clinical guideline
Date issued: August 2007
Expected review date: TBA
Reference: CG53

Summary | Documents | Development history

Summary

This guideline is about the care of people with chronic fatigue syndrome, which is also called myalgic encephalomyelitis (or encephalopathy), in the NHS in England and Wales. Throughout this booklet we refer to the condition as CFS/ME for short. The booklet explains guidance (advice) from NICE (the National Institute for Health and Clinical Excellence). It is written for people with CFS/ME, and parents or carers of people with the condition. It may also be useful for other family members or for anyone with an interest in CFS/ME.

The guideline aims to help you understand the care and treatment options that should be available in the NHS.Documents

For healthcare professionals

Chronic fatigue syndrome / Myalgic encephalomyelitis: NICE guideline
Chronic fatigue syndrome / Myalgic encephalomyelitis: NICE guideline (MS word format)
Chronic fatigue syndrome / Myalgic encephalomyelitis: Full guideline
Chronic fatigue syndrome / Myalgic encephalomyelitis: Full guideline, appendix 1
Chronic fatigue syndrome / Myalgic encephalomyelitis: Full guideline, appendix 2
Chronic fatigue syndrome / Myalgic encephalomyelitis: Full guideline, appendix 3
Chronic fatigue syndrome / Myalgic encephalomyelitis: Full guideline, appendix 4
Chronic fatigue syndrome / Myalgic encephalomyelitis: Quick reference guide

For patients, carers and the public

Chronic fatigue syndrome / Myalgic encephalomyelitis: Understanding NICE guidance PDF
Chronic fatigue syndrome / Myalgic encephalomyelitis: Understanding NICE guidance (MS word format)

Background information

2007/044 New NICE guideline to improve diagnosis and management of chronic fatigue syndrome in adults and children
2007/045 NICE recommends natalizumab for the treatment of multiple sclerosis
CG53 Chronic fatigue syndrome / Myalgic encephalomyelitis: Distribution list

Implementing this guidance

Any further information NICE has produced to help the NHS implement this guideline locally is linked to below:

None found

NICE CFS/ME guideline: Press Release, 22 August 2007

Press Release

2007/044 New NICE guideline to improve diagnosis and management of chronic fatigue syndrome in adults and children

PRESS RELEASE

New NICE guideline to improve diagnosis and management of chronic fatigue syndrome in adults and children

A new guideline to improve the diagnosis and management of chronic fatigue syndrome/ myalgic encephalomyelitis (or encephalopathy) (CFS/ME) in adults and children is launched today (22 August).

CFS/ME is a relatively common illness, affecting an estimated 193,000 people. The condition can be disabling, involving a complex range of symptoms, the most common being fatigue, but including headaches, sleep disturbance and muscle pain.

The National Institute for Health and Clinical Excellence (NICE) and the National Collaborating Centre for Primary Care have published a clinical guideline on how to effectively diagnose and manage CFS/ME in adults and children. The guideline provides recommendations to help diagnose and manage the condition, aimed at maintaining, and if possible, gradually extending an individual’s physical capacity. It also highlights the importance of shared decision-making between health professionals and people with CFS/ME, providing therapies suitable to the individual and the individual’s right to refuse or withdraw from any part of their treatment plan without it affecting future care.

Recommendations include:

Diagnosis:

• If a child or young person under 18 years old has symptoms of possible CFS/ME they should be referred to a paediatrician within 6 weeks of first seeing their doctor about the symptoms.

• After other possible causes have been excluded, a CFS/ME diagnosis should be made after symptoms have persisted for 4 months in adults, and after 3 months in a child or young person (in consultation with a paediatrician).
Management:

• An individualised management plan should be developed with the person with CFS/ME and they are in charge of the aims and goals of the overall management plan.

• Health professionals should provide care in ways suitable for the individual, which may include providing some tests or treatments at home, or support and advice by telephone or email

• Clinicians should offer advice on managing activity, rest periods, sleep patterns, diet, equipment to help maintain independence like the blue badge, and advice on fitness to work or be in education

• People with CFS/ME should not be advised to simply ‘go the gym’ or exercise more’ as this may worsen symptoms

• Cognitive behavioural therapy and/or graded exercise therapy should be offered to people with mild or moderate CFS/ME and provided for those who choose it, as there is the clearest evidence of benefit for these approaches.

Andrew Dillon, Chief Executive at NICE and Executive Lead for the guideline, said: “CFS/ME is a relatively common illness, affecting up to an estimated 250,000 people. The condition can cause debilitating symptoms, impacting significantly on the lives of those with CFS/ME, and their families and carers.

Until now there have been uncertainties about the diagnosis and management of this condition, but this new guideline will help health professionals make an accurate diagnosis, whilst considering other conditions that may be present. The evidence-based recommendations will also help improve the management of CFS/ME, including advice on ensuring patient-centred care, offering a choice of care options and tailoring therapies to suit the individual.”

Professor Richard Baker, Chair of the Guideline Development Group, GP and Head of the Department of Health Sciences at the University of Leicester, said: “Care for people with CFS/ME has varied widely, and in the worst cases, has left some people with the condition feeling that their illness isn’t recognised by the healthcare system. The publication of this CFS/ME guideline is an important opportunity to change the current situation for the better, helping both healthcare professionals and individuals by providing clear advice on how best to manage this disabling condition. The guideline sets standards for all health professionals on the best ways to provide care, drawing upon the expertise of a range of health professionals and patient representatives who understand the particular challenges of diagnosing and managing CFS/ME.”

Dr Esther Crawley, Guideline Development Group member and Consultant Paediatrician, said: “This guideline provides useful advice on how to diagnose children with suspected CFS/ME and makes it clearer when a child or young person should be referred to a specialist CFS/ME service. Although there’s no known drug to treat or cure the condition, clinicians can provide practical help to individuals such as advice on managing activity, rest periods, sleep patterns, diet, equipment to help maintain independence and advice and support with education. CFS/ME causes symptoms of varying severity, and can be very debilitating in children and young people. We frequently see children who are very severely affected and unable to get out of bed, so I am particularly pleased to see the recommendations for people with severe CFS/ME. This guideline should ensure that finally children, young people and adults who are severely affected, have their diagnosis and care supported by a CFS/ME specialist, and have access to treatment even if that means that the treatment is provided at home.”

Dr Frederick Nye, Guideline Development Group member and Infectious Disease Consultant Physician said “‘This guideline will help clinicians to diagnose CFS/ME accurately and promptly, so that effective management can be started as early as possible. Although the causes of the condition are still poorly understood, gentle progressive rehabilitation can prevent deterioration and promote recovery. CBT or graded exercise should be made available for patients with mild or moderately severe illness: both treatments have been shown in clinical trials to control symptoms and improve physical function. However, appropriate safeguards, a step-by-step approach, and a collaborative relationship between therapist and patient are all essential for success. Although all patients want to get better, none should be coerced into accepting any particular form of treatment. Management should always be underpinned by an ethos of joint decision making and informed choice.’”

Mrs Ute Elliot, Guideline Development Group member and patient representative, said: “CFS/ME has had a profound effect on my life, often robbing me of the energy to leave my home, and unable to do the simplest things like making a cup of tea. It’s important that doctors and other specialists understand how disabling CFS/ME can be, and why it’s vital that people with CFS/ME are treated as individuals as the condition affects each person differently. Based on my experiences with CFS/ME, I was pleased I could contribute my experience to the development of this guideline, and hope that it will improve the help available to people with CFS/ME and their carers.”

Ends

Notes to Editors

About the guidance

1. The guidance is available at http://www.nice.org.uk/CG53  (from 22 August 2007)

2. The evidence suggests a population prevalence of at least 0.2- 0.4%, which means that a general practice with a population of 10,000 patients is likely to have at least 20-40 patients with CFS/ME. There is a lack of epidemiological data for England, so based on the suggested prevalence, an estimated 192,799 people have CFS/ME.

3. Background information:

• Some people have relatively mild symptoms and can still manage daily activities with additional rest, while others have a serious illness that severely affects their everyday lives and may be housebound. The pattern of a person’s symptoms, and their severity, can vary from day to day, or even in the same day.

• Most people with CFS/ME will improve over time, and the prognosis in children and young people is more optimistic.
About NICE

4. NICE is the independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health.

5. NICE produces guidance in three areas of health:

• public health – guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector

• health technologies – guidance on the use of new and existing medicines, treatments and procedures within the NHS

• clinical practice – guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS.