• NICE (National Institute of Clinical Excellence) publishes first rapid COVID-19 Guidelines.
NICE announce - These guidelines have been developed to maximise patient safety whilst making the best use of NHS resources and protecting staff from infection. The guideline has been developed using the interim process and methods for developing rapid guidelines on COVID-19 and recommendations are based on evidence and expert opinion. Because we are using a different approach in order to develop these guidelines quickly to support frontline NHS staff, we will be reviewing them each week as new evidence, policy and practice emerges.
The first NICE rapid guidelines were published on 20th March, with further guidelines published since then.
The new NICE clinical guideline on ME/CFS ME/CFS: diagnosis and management - NICE Guidance in Development.
The ME Association’s Covid-19 key information and guidance of 30 March, included a NICE Guidance announcement by Dr Charles Shepherd, Hon. Medical Adviser, of the ME Association.
In my capacity as a member of the committee that is preparing the new NICE clinical guideline on ME/CFS I took part in two days of video conferencing meetings on 17 and 18 March.
However, NICE has decided to halt all further work on this guideline due to many of the clinical staff on the committee (myself included) being heavily involved with our duties in relation to coronavirus.
My personal view is that it now seems very unlikely that we will be able to meet the current target of publishing the new NICE guideline in December 2020.
NICE has also been contacted about guidance on how people with serious pre-existing health problems should be managed if they must be admitted to hospital with coronavirus infection.
• #MEAction announce - 'NICE Guidance Delayed Until Further Notice, due to Covid-19'
The National Institute of Health and Care Excellence (NICE) have suspended work on all guidelines currently in development due to the Covid-19 pandemic, including their update of the ME/CFS guideline, originally due to be published October 2020 and recently delayed by NICE to December 2020.
#MEAction’s report includes the full email from NICE, as received by all ME/CFS Guideline stakeholders.
Dear Stakeholder,
We wanted to update you on how NICE is working to support the NHS and wider health and care sector at this challenging time, and to provide more details on how the COVID-19 pandemic is affecting our normal ways of working.
During this period of emergency, NICE has adapted its priorities to support the NHS, local authorities and the wider health and social care sector to tackle COVID-19. We will only publish guidance that is therapeutically critical or focused on COVID-19-related issues.
The stakeholders and advisory committees involved in the development of our guidelines include a large number of frontline staff. We know that their priority in this crisis is caring for patients. We do not want to draw them away from this vital work.
For this reason, we have cancelled all guideline committee meetings and we will not be publishing any draft or final guidelines until further notice (except for COVID-19 rapid guidelines – see below).
At present we are not able to confirm the revised timelines for each guideline. We will be in touch to provide further information as soon as possible. For more information in the meantime, please visit our dedicated webpage.
COVID-19 rapid guidelines
We are working closely with NHS England and NHS Improvement to develop rapid guidelines on topics relevant to the management of COVID-19. These will be published weekly and will focus on a range of clinical settings.
In addition, we are producing rapid evidence reviews on medicines used to manage COVID-19 and its symptoms.
All of our COVID-19 guidelines and evidence reviews will be published on the NICE website. Enquiries about this work should be sent to nice@nice.org.uk
Kind regards, Katie Stafford, Senior Guideline Coordinator, Centre for Guidelines
#MEAction supports NICE’s aim to keep healthcare professionals on the frontline throughout this crisis and understand that professionals involved in guideline development are commonly also working in the NHS. Also, they note that this will be a very challenging time for everyone across the UK and the world and a fully comprehensive stakeholder consultation on the guidelines (due to take place from 30th June) would be next to impossible.
#MEAction are still very concerned that the existing guidance remains in place, including the harmful recommendation of Graded Exercise Therapy (GET).
• Coronavirus and Fatigue
The ME Association tell us of a Letter of Concern initiated by Physios for ME, a group of physiotherapists with a special interest in the neurological disease, and signed by members of Forward ME.
The MEA explained that the letter The letter from Forward ME and Physios for ME criticising the OHFT guidance., sent to the Oxford Psychosocial Group called for the withdrawal of an inaccurate and potentially harmful document about which they had received many complaints.
As well as highlighting the issues with the leaflet, the letter sets out clear evidence for pacing, the symptom management people with M.E. tell us they find most helpful.
• Action for M.E. Chief Executive, Sonya Chowdhury, has signed an open letter calling for the withdrawal of an inaccurate and potentially harmful NHS Trust resource.
Oxford Health NHS Foundation Trust has produced a leaflet, which says it is “one of a series about Coronavirus and mental health. The leaflets contain information about how the Coronavirus outbreak might affect your mental health, how to look after yourself, what to do if a problem persists, and where to find further information.”
However, we are extremely concerned that this leaflet:
- conflates post viral fatigue with M.E.
- purports to provide information for post-COVID-19 rehabilitation but is predominantly comprised of rehabilitation advice for M.E.
- provides is incorrect or misleading information, which is potentially detrimental to patients and may result in deterioration and exacerbation of disability, by recommending graded exercise.
• Action for M.E.’s 2019 Big Survey revealed that only one in ten people who did GET with an M.E./CFS Specialist said it helped them manage symptoms. Almost half said it had a worsening effect with others saying it had no different.
The letter has been drafted by Physios 4 ME, a group of physiotherapists with a special interest in M.E./CFS who have recently joined Forward-ME. As well as highlighting the issues with this particular leaflet, the letter sets out clear evidence for pacing, the symptom management people with M.E. tell us they find most helpful.
We are also working with the other signatories to produce information which will be provided to the Foundation Trust to ensure they are aware of the latest evidence and patient feedback.
The Worcestershire Health & Care NHS Trust were using this Oxford Psychosocial Group Coronavirus and Fatigue leaflet under the Mental Health Support topic on their website, but it has now been deleted from this location.
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