At the end of April, #MEAction UK sent the National Institute of Health and Care Excellence (NICE) a six-metre-long card containing thousands of your names and messages describing the harm caused by graded exercise therapy (GET).

NICE continues to recommend graded exercise therapy in their existing ME/CFS guidelines, whilst these are under review. Despite #MEAction UK’s campaign to ensure they are aware of the danger of GET for people with ME, they have chosen to allow this outdated recommendation to stand with no interim warning of harms. The review’s progress has been delayed due to the pandemic and it’s unclear when work will resume.  

This is deeply troubling. 

#MEAction UK has campaigned continuously during the last few years and maintains that NICE’s stance concerning graded exercise therapy is unethical and untenable. 

A spokesperson for NICE responded to the six-metre-long card, assuring us they read many of your messages and watched the short film we made of the card. They expressed appreciation for our effort to reinforce the concerns raised. 

The spokesperson from NICE said:

“With respect to the recommendation in the current guideline on ME/CFS on graded exercise therapy (GET), our position remains that we will allow the committee to fully consider all of the evidence before updating, or adding a note or warning, to any recommendations. It remains the case that the 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.”

It is unclear how long the COVID-19 crisis will continue to take centre-stage in public health.  Yet NICE once again has chosen not to add a straightforward interim warning of GET’s potential harm, putting hundreds of thousands of people with ME in the UK at further risk.

Our concern now reaches beyond the current ME community, to the impact this recommendation will have on those experiencing post-viral symptoms after contracting COVID-19. 

Previous research carried out by #MEAction UK, demonstrated a shocking difference in the levels of deterioration patients experienced, based on the advice they received when first speaking to a healthcare professional about symptoms of ME. 

Of those told to maintain or increase their activity levels, 88% and 94% reported deterioration respectively, compared to just 9% of those advised to decrease their activity levels and rest whilst feeling ill. In another recent survey, results highlighted that more than three times as many people reported severe illness after GET than before.

Researchers expect COVID-19 will cause a surge of chronic illness, including ME. As this new cohort grapples with the complexity of a stigmatised illness, sources that usually engender confidence, such as NICE, have an enormous responsibility that their advice does not exacerbate the debilitating symptoms people are already experiencing.

For as long as they waive that responsibility, we will keep campaigning to #StopGET. 

The scope for the new guideline includes a question on precautionary management strategies, of particular relevance at this extraordinary time. It has now been almost three years since NICE, after years of patient-led research and advocacy, including by #MEAction UK, agreed to update their ME/CFS guidance. However they refuse to move forward, even out of what they may see as an abundance of caution, following standardised procedures in a time that is anything but standard, at the detriment of multiple populations.

We will remain in communication with NICE on these subjects, and will update the community when there is more information.

NICE have informed stakeholders that they plan a phased restart of work on non-COVID guidelines from 1 June, but we are yet to hear of more specifics, including when the consultation period will be and when this process will start for the ME/CFS guidelines.