What do you think about the new NICE Clinical Guideline on ME/CFS?

Russell Fleming, Content Manager, ME Association

It has been a long time coming, but the draft of the new NICE clinical guideline on ME/CFS is now available to read as part of the stakeholder consultation.

“Do not offer people with ME/CFS any therapy based on physical activity or exercise as a treatment or cure for ME/CFS…”

The New NICE Guideline on ME/CFS

Registered stakeholders that include the ME Association and Forward-ME will receive the draft guideline today and be able to make a formal response until 22 December when the consultation will close.

The guideline committee will then review feedback and determine any further changes to the guideline before it is finally published in April 2021.

The Stakeholder Consultation Process

As a stakeholder in the guideline development process the ME Association will be preparing a detailed submission to send to NICE in December. To help us to do so we want to know what you think about the draft guideline.

How to take part

Please take your time to read the draft clinical guideline and then pass on your comments – preferably in very short statements with a reference to which part of the guideline you are commenting on.

You can do so by:

  • Completing the MEA Monthly Poll located to the right of this blog in the website margin: What is your overall opinion of the draft NICE guideline on ME/CFS?
  • Taking part in the discussions about the draft guideline on MEA Facebook,
  • Contacting us by email at: feedback@meassociation.org.uk

We would appreciate your comments by 07 December so that we have time to consider them before submitting the ME Association response to NICE.

Unfortunately, as we expect to receive a lot of feedback on this important topic, we will not be able to respond to all your comments and suggestions.

More Information

Draft Guideline Extracts

Be aware that ME/CFS:    
– is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is unclear
– is a fluctuating condition in which symptoms can change unpredictably in nature and severity over days, weeks or longer – ranging from being able to carry out most daily activities to severe debilitation.”
 
“Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness.”
 
“Recognise that symptoms of severe or very severe ME/CFS may mean that people:
– need a low-stimulus environment, for example a dark quiet room with interaction at a level of their choice (this may be little or no social interaction)
– are housebound or bed-bound and may need support with all activities 4 of daily living”
     
Do not offer people with ME/CFS:
– any therapy based on physical activity or exercise as a treatment or cure for ME/CFS
– any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy”
 
“Discuss with people with ME/CFS the principles of energy management, its role in supporting them to live with their symptoms, the potential benefits, and risks and what they should expect.”

The NICE Clinical Guideline for ME/CFS: Draft for Consultation 10 November 2020

Background

Following years of sustained patient pressure culminating in the petition organised by the ME Association back in 2017 that collected over 15,000 signatures, NICE reversed its previous decision and decided to completely review the 2007 clinical guideline on ME/CFS.

NICE appointed a new guideline development committee to review all the published evidence relating to diagnosis and treatment of ME/CFS and a completely new guideline has now been produced in draft form for consultation.

Members of the committee have a wide range of health professional experience and include Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, as well as 5 patient representatives (more than for any other NICE guideline).

The committee has now released a draft of the current conclusions and recommendations for stakeholder consultation. This consultation process will last from 10th November to 22nd December.

The committee will then meet again in January to review all the stakeholder comments and prepare a final version of the guideline. The current intention is to publish the new NICE guideline on 21st April 2021.

Individuals can also send in their comments to the guideline committee:

“We can accept comments from individuals. These will be considered, but you won’t get a formal response and they won’t be posted on the NICE website. Wherever possible we encourage you to submit your comments through a registered stakeholder organisation.”

The ME Association’s Initial Reaction

“We are very pleased to find that NICE has addressed many of the defects in the current guideline on ME/CFS.

“In particular, we welcome the decision to no longer recommend graded exercise therapy (GET) as a treatment for ME/CFS and the decision to give heightened recognition to the many problems faced by people with severe ME/CFS.

“We do, however, have concerns about some of the diagnostic recommendations. And there is a need to provide far more information on symptom management that is specific to ME/CFS.

“As NICE is now preparing a rapid guideline on Long COVID, a post viral syndrome that has a number of symptoms that overlap with ME/CFS, we hope that the new ME/CFS guidance on activity and energy management will also be used to help people with Long COVID.

“We will be consulting with our members on the draft and sending in a detailed stakeholder response to NICE in December.”

The ME Association

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