NICE suspend work on new ME guidelines

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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.

We support 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.

Furthermore, we 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.

We are still very concerned that the existing guidance remains in place, including the harmful recommendation of Graded Exercise Therapy (GET).

In February this year, we reached an impasse with NICE when they informed us that they would not add a warning relating to GET to the current guideline. We decided to give the wider community a route to send NICE their messages about GET on a giant card. This card is now designed and printed, with 2006 people signing their name and 1200 writing a message to NICE. 

We are currently considering when it is appropriate to send the giant card in these circumstances, but do promise that NICE will receive the messages so many of you took the time and energy to compose. Whilst we understand the further delay to the guidelines’ publication, we believe it makes it even more vital that a warning is added to the current guidelines to ensure that GET is no longer offered as a treatment to people with ME. 

ME onset is post-viral in many cases. We are further concerned that potentially harmful advice to increase physical activity may be given to those with post-viral complications after Covid-19.

If you would like more information around ME and Covid-19 please look at our Covid-19 page, that collates resources from across the globe.

Read the full email from NICE below

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 [email protected]

Kind regards,

Katie Stafford

Senior Guideline Coordinator

Centre for Guidelines

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1 thought on “NICE suspend work on new ME guidelines”

  1. Marie Josee Bllier

    Nous comprenons très bien ce que vous faites pour trouver le médicament afin d’éradiquer ce virus. Toutefois. une fois cette pandémie terminée, nous vous serions gré de bien penser que nous aussi il y a des décès et des personnes qui souffrent à l’année. Alors s,il y a de l’argent pour le COVID-19, il y a sûrement pour la recherche sur l’Encéphalomyélite myalgique. Depuis toutes ces années, on nous a ”menti” pour que les organismes qui cherchent un médicament pour au moins nous soulager. Maintenant nous savons que vous pouvez faire plus pour nous. Merci de m’avoir lu.

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