Extract from letter received from Robin Walker MP for Worcester: -
“I join the APPG in welcoming the news that the final guidelines have now been published.”
The MEA reported - All-Party Parliamentary Group on ME sent letter to NICE November 11, 2021
The All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG) have sent a letter to NICE following the publication of the new ME/CFS Guideline. The letter is shown below:
Dear Professor Leng.
Re: The publication of the new NICE Guideline on Myalgic Encephalomyelitis (ME)
We are writing as members of the All-Party Parliamentary Group (APPG) on ME to welcome the new and long-awaited NICE ME guideline.
The new guideline significantly improves upon the previous version published in 2007 as it is based on strong evidence demonstrating that ME is a complex and debilitating physiological disease. We endorse the removal of support for graded exercise therapy (GET) as a treatment for ME within the guideline. This step is widely supported by both scientific research and ME patients who have been steadfast in calling out the harmful effects of GET. With the publication of the updated guideline, the APPG looks forward to seeing the implementation of its recommendations, including the removal of GET from any treatment programmes. While biomedical treatments are being developed, people with ME must be able to benefit from proven symptom management techniques.
We understand that there is a significant knowledge gap amongst medical professionals in relation to the cause and appropriate treatment of ME. The decision made in August to delay publication due to the unwillingness of some professional groups to endorse the new guideline demonstrates this gap. Although we are pleased that the new guideline has finally be published and the good work of the guideline committee upheld, evidently, there is a great need for updated training for healthcare professionals caring for people with ME in addition to a review of current service provision. As an APPG, we look forward to seeing progress being made in this area. We wish to reiterate the APPG's support for the work of NICE which has achieved major guideline improvements and broad consensus. The new and updated guideline better reflects the lived realities of ME patients, and we believe that this guideline has the potential to be life-changing for people with ME throughout the UK. For that reason, we look forward to seeing its full implementation alongside the development of a more patient-centred approach to ME care.
Carol Monaghan MP, Andrew Gwynne MP, Cat Smith MP, Stephen Timms MP,
Debbie Abrahams MP, Alison Thewliss MP, Margaret Ferrier MP, Edward Davey MP,
Ben Lake MP, Dame Diana Johnson MP, Emma Lewell-Buck MP, Angus MacNeil MP.
Cc: Dr Paul Chrisp, Dr Peter Barry, Baroness Finlay of Llandaff
Physios for M.E.’s Reaction -
NICE Publish new Guidelines
The National Institute for Health and Care Excellence (NICE) have now published their final update of their guidance “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management”. During the stakeholder consultation process, Physios for ME provided our own detailed commentary on the draft guidelines at the end of 2020. We are pleased to see that the significant changes – removing recommendations for graded exercise therapy - have remained in the finalised guidelines, and further amendments have been made to clarify some areas following the draft consultation.
The over-riding message for physiotherapists is: “Do not offer people with ME/CFS physical activity or exercise programmes that use fixed incremental increases, based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.”
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. The guidelines are in line with our own recommendations and reflects the known adverse physiological effects of exertion.
While we are on the whole pleased with the new guidelines, we do have some comments and concerns:
1. Specialist services have historically based practice on the old NICE Guidelines, providing GET and CBT. The new guidelines represent a significant shift in clinical practice and we therefore wonder;
Who will provide training to support teams to adapt their practice?
How will these changes be overseen and monitored?
2. The new guidelines state: “If a physical activity or exercise programme is offered, it should be overseen by a physiotherapist in an ME/CFS specialist team”.
We find this to be too restrictive. People with ME may see a physiotherapist outside of a specialist ME service for other problems, such as musculoskeletal, pain or rheumatology conditions.
Under these guidelines, how should an MSK practitioner manage a shoulder injury in a person with ME? Or an orthopaedic physiotherapist provide rehabilitation to a person with ME who has just had a hip replacement?
We feel that education for all physiotherapists needs to be improved regarding ME, in particular the ability to identify and manage post exertional malaise, so that all physiotherapy interventions can be adapted and made suitable for a person with ME.
- We think all undergraduate physiotherapy programmes should include ME as standard.
- We feel that training updates based on the most recent biomedical evidence base should be made available for all physiotherapists regardless of speciality.
- We would emphasis the requirements for continuing professional development (CPD) as part of the registration with the Health & Care Professions Council, and that CPD is the responsibility of each individual practitioner
Physios for ME will be centring much of our work on addressing the points above, as well as continuing to explore research into how our profession can offer people with ME even more support that can improve quality of life. We would like to thank the team at NICE for publishing the guidelines, and all of the stakeholders and supporters for their tireless work. We also extend our respect to the ME patient community who provided their expertise to the consultation process despite the potential consequences for their own symptoms.
Doctors with M.E.’s Reaction -
NICE 2021: A Triumph of Science over Discrimination
Doctors with M.E. stands ready to work with partners and organisations to bring medical education up-to-date and assist in developing the right services for ME/CFS patients.
We are delighted that the new NICE guideline on ME/CFS has been published. 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. The new guideline discards discredited psychological theories and therapies in favour of a more patient centred approach, driven by improved scientific understanding. It represents a positive and total paradigm change, uniting around the science, official disease classification and medico-legal compliance implications.
This translation of scientific knowledge into clinical practice is an opportunity for doctors and patients to come together to develop more concordant and productive relationships, whereby GPs and specialists are supported in offering early diagnosis, relevant investigations, symptom treatment and compassionate care. Misdiagnosis and delays should cease to occur. Harmful Graded Exercise Therapy is discontinued and must not be replaced with renamed or rebranded versions, which would be clinically, scientifically and legally unsustainable. Accounting for systemic exertion intolerance and post exertional symptom exacerbation is at the heart of the science and the new guideline. Work must now begin to:
- Remove outdated and erroneous educational material or policies which contain discredited theories and harmful recommendations
- Develop curriculums and educational material which reflect scientific knowledge
- Training and education to bring clinicians and practitioners up-to-date
- Restructure, commission and/or redesign health care services to properly meet the needs of ME/CFS patients
- Provide adequate social care
- Provide appropriate accommodations at work and in educational settings
We extend our thanks to NICE and to the ME/CFS Guideline Development Committee. Doctors with M.E. stand ready to work with partners and organisations to make all this a reality. There is a long way to go and significant funding, resources and culture change will be needed but at long last, the right care and support for people living with ME/CFS is on the horizon.
Chartered Society of Physiotherapy’s Reaction -
NICE publishes new guidance about ME/chronic fatigue syndrome
The National Institute for Health and Care Excellence (NICE) has now published its new guidance on the diagnosis and management of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). The publication of the new guidelines follows a delay to the guidance earlier this year. At the time the Institute explained that this was due to the complexities surrounding the condition, meaning they had been unable to gain comprehensive agreement and support for their updated recommendations. This has now been resolved.
Commenting on the publication of the new guidelines, Natalie Beswetherick, director of practice and development at the Chartered Society of Physiotherapy, said:
‘It is very welcome that a consensus has been reached and the guidance can now be published after what has been an understandably fraught process.
‘It is vitally important that people living with ME receive personalised care that is built around their needs, especially where physical activity is concerned.
‘We were clear during the consultation phase and recent additional discussions that approaches that use fixed incremental increases in activity levels do not meet that criteria and should not be used.
‘The guidelines reflect this and I expect all those physiotherapists working with people who have ME/CFS to read the document, reflect on what this means for their practice and make any changes to their practice in light of the revised guidelines.
‘Above all, these guidelines provide a platform for consistency for all those healthcare practitioners working with this population, to ensure people living with ME/CFS get the holistic, person-centred support they need.’
Final ME/CFS NICE guideline recommends ‘personalised care and support plan’
NICE’s final guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) has recommended that patients receive a ‘personalised care and support plan’.
Today’s publication of the final guideline comes as NICE halted the publication of the long-anticipated update in August because of ‘strong views’ around management of the condition.
After a ‘successful’ roundtable discussion to address concerns that had been raised by some professional bodies, NICE said it was now confident that the guidelines, which cover children, young people and adults could be effectively implemented across the system.
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.
It outlines the condition as debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties described as ‘brain fog’.
People with all four symptoms that have lasted three months or more should be referred to a specialist team and a range of management approaches should be offered depending on an individuals’ preferences and priorities, the guidelines state.
But any programme based on fixed incremental increases in physical activity or exercise such as GET, should not be used, NICE said. No therapy based on exercise or physical activity should be given as a ‘cure’. Personalised exercise programmes can be offered in people with ME/CFS who want the option but it should be overseen by a specialist physiotherapist and reviewed regularly.
Nursing Times’ Reaction
Updated ME/CFS guidance finally published following controversy
Graded exercise therapy (GET) should not be used to treat patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CSF) because it can worsen the condition, according to updated guidance from the National Institute for Health and Care Excellence (NICE). The NICE guidance published today also states that cognitive behavioural therapy (CBT) should not be considered a cure for ME/CFS, although it may sometimes be beneficial in managing mental health consequences of living with the condition, as with any chronic illness.
Instead of being encouraged to push themselves to be more active, patients with ME/CSF should receive individually tailored support from a multidisciplinary team to help them manage their symptoms, and stay within their energy limit, the guidance recommends. This recommendation reflects a shift towards considering ME/CFS as a complex, multi-system disorder instead of as a psychosomatic condition that can be treated or cured with psychological and/or behavioural interventions.
The NICE guideline includes clarifications to the diagnostic criteria that should be used to identify ME/CFS. It is characterised by four key symptoms: debilitating fatigue that gets worse following activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties known as “brain fog”. Anyone with all four of these symptoms lasting three months or more should be assessed by a ME/CFS specialist team.
Caroline Kingdon, research nurse and UK ME/CFS biobank lead at the London School of Hygiene & Tropical Medicine, who was on the NICE committee working on the revised guideline, said: “This severe, complex multisystem disease has long been misjudged by the healthcare profession. Educating nurses about the needs of people with ME/CFS will help drive the step change in understanding and belief, compassion and empathy required to care for all patients with ME/CFS. “During my many years as a nurse, I have rarely encountered individuals who are as ill as people with the most severe ME/CFS. Even when people with mild disease consider themselves fully recovered, they have often simply adjusted their lives to manage its effects.”
Our recent group blog announcing the new NICE Guideline, included statements from -
NICE, (National Institute for Health and Care Excellence); the MEA (the ME Association); AfME (Action for ME); MERUK (ME Research UK); BACME (British Association of CFS/ME); and FORWARD-ME.
• A.P.P.G • M.E. Association • MP • N.I.C.E. • Post COVID Syndrome (Long COVID)