THE NICE GUIDELINE ME/CFS
November 2021

The ME Association is delighted that the new NICE guideline has been published (29th October 2021) and we fully support all the new recommendations

Overview

The new guideline on ME/CFS from the National Institute for Health and Care Excellence (NICE) provides a framework of recommendations to health and social care services in England, Wales, and Northern Ireland – and is recognised in Scotland.

The review began in 2018 after many years of advocacy because the previous guideline was not fit for purpose. The guideline committee – comprising of health professionals and patients – has worked very hard and provided evidence-based recommendations to NICE following extensive stakeholder consultations which began in November 2020.

NICE then produced a final draft of the guideline which was sent to stakeholders in the first week of August 2021. We have been waiting almost 15 years for a clinical guideline that provides safe and practical recommendations, and gives due consideration to the most vulnerable in the patient community.

NICE Guideline

Below are links to the NICE Guideline on their website and a PDF with the full content

ME Association Statement

The ME Association is delighted that the new NICE guideline has been published (29th October 2021) and we fully support all the new recommendations.

It has been widely welcomed by the patient community and it's important to note that the new recommendations are also being supported by BACME – the organisation for health professionals who work in the hospital based referral services.

People with ME have had to live with a NICE guideline for almost 15 years that was unfit for purpose – because it recommended treatments that were either ineffective or harmful.

After a very thorough review of all the evidence – from clinical trials, experts and patients – we now have a guideline that has reversed these recommendations.

These are just some of the key recommendations in the new guideline…..

  • Recognises that ME is serious and complex medical disease
  • Emphasises the need for early and accurate diagnosis – preferably within 3 months of the onset of symptoms, which normally follow an acute viral infection, and where there are important overlaps with Long Covid
  • Provides sensible guidance on activity and energy management in order to avoid symptom exacerbation and no longer recommends GET
  • Recognises the special problems faced by children and those with severe ME

The next challenge involves educating and training all health professionals on how to diagnose and manage ME and setting up a full UK network of hospital-based referral services where GPs can refer people for further helpMedia coverage has been extensive and supportive – apart from comments from some of the Royal Colleges, some are still not happy with the final version!  All of these articles and news items can be found on the MEA Facebook page

Dr Charles Shepherd
Hon Medical Adviser MEA

Dr.Shepherd, MEA Hon Medical Adviser

Comment

For us patients with ME/Chronic Fatigue Syndrome, the publication of a new Guideline by The National Institute for Health and Care Excellence on managing our illness is hugely welcome.

It’s been a long haul. The ME Association has campaigned for change to the 2007 Guideline ever since it was published. Finally NICE agreed to look at it again. Three years of intense scrutiny by the Guideline Committee followed. And now it’s published

This is a sea change. Treatments based on ‘deconditioning’, ideal for bedridden patients with wasted muscles but inappropriate for ME/CFS sufferers, have been consigned to medical history. The ‘misguided illness belief’ theory has joined it.

The Guideline comes at a crucial time. Long Covid is likely to stalk the NHS for some years. Its symptoms of overwhelming tiredness and brain fog are bedfellows of ME/CFS. Let's hope that our medical professionals implement the new Guidelines promptly. Patients with ME/CFS and Long Covid deserve that. We shall be monitoring implementation carefully. It's one thing to have a Guideline, quite another for medical professionals to adopt new treatments and help us to recover.

Neil Riley
Chairman of The ME Association

Forward-ME original press release and statement endorsing proposed NICE clinical guideline

Forward ME had circulated a press release and statement among journalists on 17 August ahead of the original publication date for the NICE Clinical Guideline, and these can be found below. They demonstrate support for the new recommendations which included many positive developments that would help improve health and social care provision for people with ME/CFS.

Statement Introduction 

Forward-ME welcome the new NICE Clinical Guideline and hope it will lead to improved healthcare provision and better relations between healthcare professionals and people with ME. 

There is still a long way to go before we truly understand what causes and perpetuates this neurological condition, and we encourage researchers and funding bodies to prioritise investigations particularly in those areas highlighted by the guideline’s research recommendations.  

The key message the guideline carries is that ME is a medical condition that requires a biomedical approach. It is not a biopsychosocial (BPS) condition. We hope that the new guideline will signal a change in some attitudes, just as there has been for diseases such as epilepsy, MS, diabetes, and Parkinson’s in the past.  

We hope that with this new guideline health and social care professionals, clinical commissioners, charities, and people with ME will all work together to improve healthcare provision and make our incredible NHS accessible to all. 

The guideline represents a new chapter in the history of ME. There is no place for those who perpetuated the stigma and misunderstanding that has caused so many people to suffer.  

We look forward to working closely with patients, carers, health and social care professionals, commissioners and researchers to implement these recommendations and build a brighter future for people with ME. 

We were pleased when NICE agreed to review their 2007 guideline for ME/CFS in September 2018. We appreciate the care with which the Guideline Development Group have managed an extraordinarily complex assignment.  

We found the following to be particularly helpful:  

  • They respect patients in a way that is compassionate and just.  
  • They have understood the needs of the patient community and have recognised most of their needs.  
  • The special emphasis placed on the needs of children and young people is welcome.  
  • The recognition that safeguarding is important and that children and young people or those who are severely affected might be in a situation where symptoms are confused with abuse or neglect. 
  • NICE gives firm directive for informed consent and patient-centred care. It is important that people with ME  (and their family members) are completely involved and have a right to refuse care without it affecting future care in any ongoing relationship with healthcare professionals. 
  • The emphasis placed on early and accurate diagnosis and the recommendation that people with suspected ME begin diagnostic assessment within weeks of symptoms appearing. 
  • NICE no longer recommend that ME can be treated effectively using cognitive behaviour therapy (CBT) and graded exercise therapy (GET); that exercise needs to be approached with caution, and these therapies are not curative. 
  • The guideline proposes that people affected by ME take care to conserve energy and employ safe approaches to energy management 
  • Also, importantly, NICE recognise the need for continued training and education and healthcare professionals. 
  • We are pleased that specialist teams are commonly led by medically trained clinicians from a variety of specialisms. We agree that all specialist services should be led by medically trained physicians/doctors or consultants. This would help reduce regional health inequalities in medical care for this disease.  
  • We are pleased to see that the areas for research recommended by NICE, which highlight the inadequacies of current medical knowledge, are key. 

We have the following concerns: 

  • There is no acknowledgment that ME is classified by WHO and SNOMED-CT as a neurological disease; the latter mandated within NHS England and being implemented in NHS Wales, NHS Scotland and NHS Northern Ireland. These classifications are important, not only legally to healthcare providers to ensure correct implementation of the protocols, but also to people who have ME because it helps to validate the illness, encourage medical awareness  and reduce the stigma that is still experienced.  
  • The November draft contained clear statements to the effect that ‘CBT is not a treatment or cure for ME/CFS’ and ‘Do not offer CBT as a treatment or cure for ME/CFS’. These statements have been excluded from the current guideline and we feel they should not have been. 
  • The final guideline states that CBT can be used to help symptom control, though there is no evidence of effectiveness that was considered by the guideline committee. It confirms that CBT does not assume that people have “abnormal illness beliefs”, but it appears to leave the door open to accept this as an explanation for symptoms. We feel this is wrong 
  • The highly respected Oxford Handbook on Psychotherapy Ethics says therapists must clearly distinguish between CBT that helps patients cope with disease and CBT that places responsibility for the illness on the patient. They must recognise that it is legally and ethically unsustainable to provide the latter where it is possible that patients suffer from disease. 
  • We appreciate that CBT may sometimes be helpful when learning to cope with long-term debilitating illness, but we cannot understand why the guideline contains two convoluted pages of advice about CBT when the guideline for multiple sclerosis (CG186), for example, carries a single sentence. It is also too open to misinterpretation that will negate the intention of the guideline. 
  • Whilst GET is expressly excluded, the introduction of ‘exercise programmes’ with no explanation of what they could or would involve and no evidence of safety or efficacy in the evidence gathering process leaves open the possibility of further misinterpretation of the guideline or mere rebranding of current practices that will negate the Committee’s work. This risk is particularly the case where alternative diagnoses such as functional neurological disorder (FND) are assumed that incorrectly assume diagnostic equivalence. The amended guideline now risks a very probable contribution to this problem. 

For the future: 

  • It is for the funders to prioritise funding for ME research and to ensure that research is of the highest scientific and ethical quality. It is for medical, educational and social welfare practitioners to ensure that people with ME are listened to, that they are treated respectfully and lawfully.  
  • There is no place for confrontation or division that has existed between the physiological scientific consensus and those who believed that ME is a BPS condition. 

We look forward to working closely with all those concerned about ME including patients, carers, medical practitioners, or researchers to build upon the science to create a future where ME is accepted, treated appropriately and people with ME truly cared for. 

“The new guideline should receive support from both professionals and patients alike. NICE took due care and attention developing these guidelines in a process lasting 4 years.

“It applied rigorous methodology, for which it is world-renowned, and recruited highly regarded professionals and lay people to the review panel. Consensus decisions were taken by the panel for a much improved set of guidelines.

“It would be understandable if implementation of the completed guidelines takes additional time to put new practice in place.”

Prof Chris Ponting, Professor of Medical Bioinformatics, University of Edinburgh; Investigator, DecodeME study
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