PhysioUpdate 2nd November 2021

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

Source: https://www.nice.org.uk/news/article/nice-me-cfs-guideline-outlines-steps-for-better-diagnosis-and-management

'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

Forward-ME: https://forward-me.co.uk

To read the full version of Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, visit: https://www.nice.org.uk/guidance/ng206

Fracture liaison services should available much more widely than they currently are, according to the International Osteoporosis Foundation (IOF)

In a call for action released today on World Osteoporosis Day (20 October), the IOF argues that fracture liaison services are a good example of post-fracture care coordination programmes.

According to a world map on the IOF's website, exemplary services are currently available at a number of sites in all four UK countries, including Eastbourne District General Hospital, Princess of Wales Hospital in Bridgend, Aberdeen Royal Infirmary and Craigavon Area Hospital in Northern Ireland.

What is a fracture liaison service? 

• it is a coordinated, multidisciplinary model of care ensuring that everyone arriving at a hospital with a fragility fracture is assessed appropriately
• patients should receive the information and interventions they need to reduce their risk of further fractures
• most patients will receive rehabilitation and lifestyle advice, prescriptions for effective treatments, monitoring, and be referred to a falls prevention service [source IOF]
  

High rates of fragility fractures

One woman in three and one man in five men can expect to sustain a fragility fracture from the age of 50 onwards. Among those who survive a hip fracture, one in three (33 per cent) are totally dependent or in a nursing home in the year following the fracture.

Cyrus Cooper, IOF president, said: ‘We know that up to half of the patients who present to hospital with a hip fracture had broken another bone in the months or years before breaking their hip.

‘We also know that without treatment for osteoporosis, a woman who has had a first spine fracture is at substantial risk for additional fractures within the next one to two years.

‘Nevertheless, although it would be critically important to ensure that all patients receive timely preventative intervention, approximately 80 per cent of fracture patients worldwide do not get assessed and treated for osteoporosis.’

Paucity of services

Despite the benefits of systematic post-fracture care for secondary fracture prevention, very few countries offer these programmes, the IOF states. A recent study revealed that eight European countries do not have any fracture liaison services; 13 had poor coverage and only six reported moderate coverage (with a fracture liaison service in more than a quarter of hospitals nationally).

For more details, see: https://www.capturethefracture.org

Post-fracture programmes are a 'worthwhile healthcare investment which, most importantly, pays off by helping older adults remain healthy, active, and independent as they age' [Philippe Halbout, IOF]

Philippe Halbout, IOF chief executive officer, said: ‘Due to the ageing of the world’s populations, it is expected that by 2050, the global incidence of hip fracture will increase by 310 per cent in men and 240 per cent in women, compared to rates in 1990.'

Dr Halbout urged all healthcare authorities to implement post-fracture care coordination programmes in their hospitals. He added: ‘It is a worthwhile healthcare investment which, most importantly, pays off by helping older adults remain healthy, active, and independent as they age.’ 

Life with Osteoporosis in the UK 

Meanwhile in the UK, where the condition affects 3.5 million people, the Royal Osteoporosis Society (ROS) launched its Life with Osteoporosis report today.

Key findings from a survey conducted by the ROS among people with the condition include:

• one in four (26 per cent) lives with long-term pain
• just over half (56 per cent) felt confident about managing their pain – a 10-point drop from 2014
• four in ten (42 per cent) said their osteoporosis affected them physically; 71 per cent had suffered a loss in height or change in body shape, including curvature of the spine (warning signs often mistaken for ‘just getting old’)
• just over half (51 per cent) reduced or stopped hobbies, while 47 per cent cut back on social activities

One in five (17 per cent) said they had scaled back their work because of their osteoporosis – either retiring early or reducing their hours. This suggests the disease could be costing the UK economy significantly lower output from more than 500,000 people, the ROS says.

To download a copy of the Life with Osteoporosis report, visit: https://strwebprdmedia.blob.core.windows.net/media/h3wnxvdq/ros-life-with-osteoporosis-report-2021.pdf

About World Osteoporosis Day

World Osteoporosis Day is marked annually on 20 October to raise awareness about bone health and osteoporosis prevention. The banner for this year's campaign is ‘Take Action For Bone Health’. Supporters are calling for global action to fight osteoporosis and related fractures worldwide.

For more details, visit: http://www.worldosteoporosisday.org

Physiotherapy leaders Debbie Davies and Ruth Emanuel were shortlisted earlier this week by a panel judging the Advancing Healthcare Awards Wales 2021.

They were nominated jointly in the ‘leadership and change management’ category in this year’s awards, the final of which will take place at a ceremony on 26 November.

There are eight categories in this year’s awards, and those in the first seven (which includes the leadership and change management category) could be named overall winner. Six of the categories are open to allied health professionals (AHPs) and health scientists, with the remaining two being open to those in student and support worker roles.

The awards are an opportunity to celebrate everything that is done every single day in our NHS for the length and breadth of Wales [First minister for Wales Mark Drakeford] 

Technical instructor's contribution recognised

Physiotherapy technical instructor Chris Richards from Hywel Dda University Health Board was shortlisted for making an ‘outstanding achievement’ in his role. This category is open to healthcare science apprentices, support workers, assistants or associates who work with an AHP.

This category aims to recognise the ‘increasing contribution’ of individuals who provide, or help to provide, ‘high quality, creative care which enhances the quality of life for the citizen’.

Leading edge

Debbie is the head of the physiotherapy service at Cwm Taf Morgannwg University Health Board, while Ruth has an equivalent post at Swansea Bay University Health Board.

The leadership category, which is sponsored by Health Education and Improvement Wales, aims to identify AHPs who are ‘inspirational leaders who have empowered and transformed workforce wellbeing and engagement by demonstrating positive changes in staff.’

The other two people who were shortlisted in the leadership category are occupational therapist Paul Dunning, professional head of staff health and wellbeing at Swansea Bay University Health Board, and Megan Fealey, a genomics implementation officer with the All Wales Medical Genomics Service.

Chance to celebrate achievements

First minister for Wales Mark Drakeford described the awards as ‘an opportunity to celebrate everything that is done every single day in our NHS for the length and breadth of Wales’.

For more information, visit: https://ahawards.co.uk/wales