The new NICE Guideline for ME/CFS was finally published on 29 October 2021. This is an overview of articles, statements and other comments.
The guideline covers every aspect of ME/CFS in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review.
Media & Clinicians’ publications
New guidance from the National Institute for Health and Care Excellence (Nice) on ME had been due in August, but was put on hold following concerns from some groups over its contents.
NICE said it had held a ‘successful roundtable discussion’ to discuss concerns with the updated guidance and had added ‘explanatory detail’ to some sections to improve the clarity of its recommendations
More than a decade of lobbying to stop people with the condition being recommended graded exercise therapy is finally at an end.
New guidance comes after campaigners warned people were being ‘seriously harmed’
ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms, the NICE guidelines stress.
“ME/CFS is a complex long-term condition that causes disordered energy metabolism and can be profoundly disabling.” – Lady Finlay, vice-chair of the guideline committee
It affects the nervous and immune systems and the fatigue felt by sufferers is different to what ordinary tiredness feels like.
People with ME will no longer be offered graded exercise as treatment as new clinical guidance recognises that it can make the condition worse.
Nursing in Practise
NICE also said that although CBT has sometimes been assumed to be a cure for ME/CFS, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness.
“Nice took due care and attention developing these guidelines, applying their rigorous methods and listening to highly regarded professionals and lay people. Low and very low quality scientific evidence was rightly discarded.” – Professor Chris Ponting
“This new guideline will have a big impact on care for people with ME, and draws a line under the damaging therapies of the past.” – Dr Charles Shepherd, ME Association
“The guideline emphasises the importance of a personalised management plan for areas such as energy management – including the importance of rest and staying within the individual’s energy limits – the treatment of specific symptoms, and guidance on managing flares and exacerbations.” – Peter Barry, chairman of the guideline committee
Energy management should consider all types of activity (cognitive, physical, emotional, and social) that help patients learn to use the amount of energy they have, while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits.
“As well as bringing together the best available scientific evidence, we’ve also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart.” – Paul Chrisp, director of the Centre for Guidelines at NICE
“This is a huge step for people with ME. Finally science is winning over stigma and paternalism in healthcare, and we can move towards better care for the thousands living with this devastating disease.” – Sian Leary, MEAction UK
BBC Radio Ulster
Science Media Center
Mrs Caroline Kingdon, Research Fellow: “Importantly, the guideline recognises that ME/CFS can cause profound, long-term illness and disability, and that people with ME/CFS may have experienced prejudice, disbelief and stigma.”
Dr David Strain: “For people with lived experience, it highlights the importance of post exertional malaise in the diagnostic criteria. This differentiates chronic fatigue due to other causes from those with the specific myalgic encephalomyelitis (ME) syndrome.”
Prof Kevin McConway: “One change is in the name of the condition – the previous guideline called it CFS/ME, and the name has changed in this one to ME/CFS – I know that names do matter.”
Dr Karl Morten: “This is a transformative step for treatments offered to ME/CFS patients in the UK.”
Critical comments from the BPS-lobby in the article.
ME/CFS is a neurological disease with multisystem symptoms, and NICE have updated their guideline to recognize the severity of this medical condition, and to update education and understanding the experience of people with ME/CFS and the need for more scientific research.
On the Wight
ME is one of the most underfunded and under-researched illnesses, despite it affecting millions of people around the world. 80 per cent of ME is post-infectious, meaning that individuals get a virus or a bacterial infection and never recover.
Neuroscience News & Research
The guideline identifies the symptoms of ME/CFS as debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties (‘brain fog’).
The Northern Echo
The guideline also recommends a route to earlier diagnosis for those with ME/CFS, reducing the time from four months to three that a person needs to have persistent symptoms before a diagnosis is made.
‘The new guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that future children and adults with CFS will not repeat the anguish of the past.’ – Sonya Chowdhury, Action for ME
National Health Executive
“Those with ME/CFS need to be listened to, understood and supported to adapt their lives. The committee members involved in this guideline have worked particularly hard to ensure care becomes more empathetic and focused on the individual’s needs.” – Baroness Finlay, vice-chair of the guideline committee
We hope and believe the guideline will provide much needed stimulus for substantial, publicly funded biomedical research into the causes, consequences and treatment of this disease.
“This new NICE guidance should now be acted upon without delay by all health professionals who are managing people with ME/CFS.” – Dr. Charles Shepherd
NICE hopes that system partners and the ME/CFS community will work together to make sure these important recommendations are implemented.
Action for ME
Doctors and people with M.E. welcome the new NICE guideline on ME/CFS, which brings major improvements to the diagnosis, management, and support for people with ME.
ME Research UK
Today’s publication of the updated NICE guideline on ME/CFS marks a significant step in the acceptance of ME as a physical illness and the recognition of appropriate treatments for people affected by the condition.
We hope and believe the Guideline will provide much needed stimulus for substantial, publicly funded biomedical research into the causes, consequences and treatment of this disease.
This guideline marks the move away from using GET programmes for treating ME/CFS. This is a move the majority of BACME members working in NHS specialist services have already made.
Royal College of Phyicians
These [GET] have provided benefit to many patients and should not be discontinued. However, we recognise that the phrase GET is unhelpful and this terminology should be dropped to allow clinicians to work with their patients in a more productive way.
Critical comments from: David Tuller (Dr PH), Prof Brian Hughes, Dr. Kevin Lee, Dr. Asad Khan, Prof Brendan Delaney, Prof Jonas R. Kunst, Dr. Elisa Perego, Dr. Emma Reinhold and Sten Helmfrid (PhD Physics).
Physios for ME
This description defines graded exercise therapy (“GET”) but is not exclusive to this terminology, so it is important to understand that any treatment approach that uses fixed increments and is based on a deconditioning theory should not be used, regardless of what it may be called.
Invest in ME
The future for people with ME still, tragically, remains uncertain following the publication of these guidelines – and lies in the hands of others and their interpretation of these guidelines.
The next challenge involves educating and training all health professionals on how to diagnose and manage ME and setting up a full network of hospital-based referral services where GPs can refer for further help.
Royal College of Occupational Therapists
We welcome the release of the NICE guideline on ME/CFS.
Doctors with ME
Doctors with M.E. considers the launch of this guideline to be a watershed moment in the history of ME/CFS medical care in the UK, with implications that extend to those Long Covid (PASC) patients who also meet ME/CFS diagnostic criteria.
Prof Brian Hughes
David Tuller, Dr PH
Valerie Eliot Smith, Barrister
29/10/21 – A historic change for the ME/CFS community
Jørn Tore Haugen / Nina E. Steinkopf
Congratulations and thank you to everybody who made this paradigme shift happen.
May the rest of the world follow soon. ❤
MillionsMissing Stavanger, Norway
Blog edited 2/11/21