After years of campaigning to highlight the harm people with ME have experienced when undergoing graded exercise therapy, #MEAction UK have just received a momentous email from the National Institute for Health and Care Excellence (NICE), advising us that:
NICE have updated the warning on the 2007 CFS/ME guideline, directing health professionals to the new draft recommendations on graded exercise therapy which explicitly state:
“Do not offer people with ME/CFS any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy”
In the response we have received from NICE, they say:
“As a result of your email, we have amended the note on the overview page of the current guideline to highlight that the draft recommendations are now available, including those on GET.”
Here’s the amended warning:
“NICE is aware of concerns about graded exercise therapy (GET) and is updating the current recommendations. Please see the guideline in development page for information on our update (including draft recommendations on GET) which we expect to publish in April 2021. We are also developing guidance on the management of the long-term effects of COVID-19.”
This is a major improvement from the previous statement that related only to those recovering from COVID-19:
“NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID‑19. Please see the guideline in development page for information on our update of this guidance, which will include reviewing the evidence on GET.”
While the 2007 CFS/ME guideline remains in place until April 2021, this is a major win for the ME community.
We would like to thank the National Institute for Health and Care Excellence for taking this step to safeguard people with ME from a harmful treatment.
Read our email exchange below:
Dear Paul, Helen and Katie,
First off, thank you for all of your hard work around the ME/CFS guideline, it is a major improvement.
We are writing to you in relation to the recommendations in the draft guideline and what they mean for the current guideline that remains in place until 21st April 2021.
You have maintained in your responses to us throughout the review process that the committee needed to be able to assess all the evidence prior to you putting a warning on the current guideline, citing concern that it could unduly influence their interrogation of the evidence.
The committee has now assessed the evidence and clearly found that the current recommendation of graded exercise therapy has little evidence of benefit, yet has significant evidence of harm.
We recognise this may be an uncommon situation to be in, and that there may not be a clear procedure for you to follow.
There appear to be a few possible options such as:
Removing the current guideline from the website and directing interested parties to the new draft guideline, with a proviso that it still needs to go through this consultation stage.
Putting a prominent notice on the front of the guideline, similar to the one you have added around Long Covid, noting that the new draft guideline recommends against the use of graded exercise therapy, and linking to the new draft guideline.
Adding a prominent notice to the recommendation of graded exercise therapy itself, noting that the new draft guideline recommends against this and linking to that section of the new draft guideline.
If it would be helpful to have a phone call to discuss how to move this forwards please do say.
I hope you have been able to read some of the reactions from people with ME and their carers on social media. There has already been significant positive feedback, with more people than I have been able to count saying they were in tears of relief reading the draft guideline.
On behalf of #MEAction UK
I’m so sorry for the delay in replying to your email below, this was an oversight on my part so thank you for your follow up email.
Thank you for your positive feedback on the draft guideline.
I’ve discussed your email with colleagues in the Centre for Guidelines.
As part of the guideline development process, the committee still needs to consider comments submitted during consultation. Those comments, and the committee’s response, inform the final guideline and it is not finalised until this consideration has happened.
So, our position is that the published guideline remains in place until the new one is published. However, although it remains the case that the current guideline is clear that any course of treatment or management should be as a result of a shared decision after discussion of the potential benefits and risks, clinicians might want to consider whether, in light of the draft recommendations around the use of GET and pending publication of the final guidance, it would be appropriate to initiate patients on this treatment.
As a result of your email, we have amended the note on the overview page of the current guideline to highlight that the draft recommendations are now available, including those on GET.
With best wishes for a lovely Christmas,
Senior communications manager (enquiries)
National Institute for Health and Care Excellence