Coalition including specialist ME physios welcomes NICE guideline's 'break from the past'
A coalition of charities and organisations in the myalgic encephalomyelitis (ME) field – which includes a group of specialist physiotherapists – has welcomed the publication of an updated guideline on the condition from the National Institute of Care and Health Excellence (NICE).
The Forward-ME coalition represents 12 organisations in the field order to give the ‘community’ a ‘unified and perhaps louder voice’ in discussions with the government and medical societies, among others.
Physios for ME
The specialist physiotherapists’ group – Physios for ME – was created in 2019 with a remit to address the issues around physiotherapy provision for people with the condition.
Its website states: ‘We are aware that people with ME may come into contact with physiotherapists in many services; musculoskeletal, neurological, community, paediatrics, pain, fatigue, rheumatology, private practice – as well as specialist ME clinics.
‘However, education about ME is limited for most physiotherapists and current guidelines do not reflect more recent evidence about the potential harm of some treatment approaches.’
'Energy management' techniques
In statement released today to coincide with the release of the NICE guideline, Forward-ME says it ‘brings major improvements to the diagnosis, management and support for people with ME’.
Crucially, it says, the guideline endorses the use of ‘energy management’ techniques that aim to avoid triggering ‘post-exertional malaise’ and exacerbating existing symptoms.
‘This approach recommends people with ME plan their physical and cognitive activities to stay within their energy limits, incorporating rest where necessary. This is also known as “pacing”,’ the coalition notes.
It describes the guidelines recommendation on the use of graded exercise therapy as a ‘clear break from the past’.
A physical activity or exercise programme should only be offered on the basis that it is delivered or overseen by a physiotherapist in an ME/CFS specialist team and is regularly reviewed [NICE statement]
‘The recommendations on “energy management” will also help people with long Covid who experience post-exertional malaise, many of whom have reported that “graded exercise therapy” worsened their condition, and their symptoms were dismissed as anxiety.’
Cognitive behavioural therapy is 'not a cure'
The Forward-ME coalition also welcomed the guideline’s acceptance that cognitive behavioural therapy (CBT) can help some people cope with the distress associated with having a long-term condition, but does not offer a ‘cure’.
Welcoming the guideline’s stance on issues relating to safeguarding children, the coalition states: ‘Some parents of children with ME have been subjected to inappropriate child protection orders, and threatened with the removal of their children, in the belief that the parents had caused a fabricated or induced illness’.
Delay allowed for discussion
The NICE guideline was originally scheduled for publication in August, but this was delayed so that discussions could take place between various royal colleges and ME charities. As a result, changes were made.
What NICE says on exercise and the physio’s role
The guideline makes it clear that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered for the treatment of ME/CFS. Discussions with stakeholders highlighted that the term ‘GET’ is understood in different ways and the guideline sets out clearly what is meant by the term
The importance of ensuring that people remain within their energy limits when undertaking activity of any kind is also highlighted
The guideline recommends that any physical activity or exercise programmes should only be considered for people with ME/CFS in specific circumstances and should begin by establishing the person’s physical activity capability at a level that does not worsen their symptoms
It also says a physical activity or exercise programme should only be offered on the basis that it is delivered or overseen by a physiotherapist in an ME/CFS specialist team and is regularly reviewed
'All health professionals need ME training'
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 [Charles Shepherd, ME Association]
Charles Shepherd is an honorary medical adviser with the ME Association who was a member of the committee that prepared the new guideline. He said: ‘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 new guideline that has reversed these recommendations and should be widely welcomed by people with ME.'
Dr Shepherd added: ‘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.’
'Foundation of hope'
Sonya Chowdhury, Action for ME’s chief executive officer, said the guideline ‘acknowledges the truth of people’s experiences, and creates a foundation for hope that in the future, children and adults with ME will receive an improved standard of care and support’.
Jonathan Davies, who chairs ME Research UK, said: ‘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 is a very special day for people with ME – publication of a new evidence-based NICE guideline which confirms that this is a serious and very debilitating medical disease.'
He added: ‘I welcome the emphasis on early and accurate diagnosis and the need to provide early guidance on symptom management when people are not recovering from a viral infection and a diagnosis of ME is suspected.’
David Strain, a medical adviser with Action for ME, said: ‘The guideline should drive better acceptance of ME as serious medical condition and encourage doctors to personalise care based on individual needs.' Dr Strain added: ‘It is a real opportunity for doctors to transform the care patients receive.’
It is estimated that more than 250,000 people in England and Wales have ME/CFS, with women being affected at a rate of about 2.4 times more than men.
Physios for ME: https://www.physiosforme.com
To read the full version of Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, visit: https://www.nice.org.uk/guidance/ng206Author: Ian A McMillan