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Physios for ME response to delayed NICE Guidelines

The last minute delay to publication of the NICE Guidelines has shocked everyone involved in the process, including Physios for ME. As stakeholders we had already taken part in the lengthy and in-depth consultation process and we find it difficult to understand what more can be discussed given the finalised guidelines were based on a robust analysis of the current evidence base.

We are members of Forward ME, who have produced a joint statement that includes the quote:

No minority party should be able to undermine the careful scientific consensus established by the NICE committee and the rigorous work that has been undertaken in good faith.” – Fwd ME

We are aware that a roundtable will be scheduled in September 2021 and we will continue to follow the process closely.

Our initial reaction to the delay was one of great concern as to the impact this would have on the ME community, as we understand that cognitive and emotional stressors can cause symptom exacerbation.

From our own perspective, we are deeply disappointed and frustrated at the delay. The draft guidelines presented at the end of 2020 would provide a clear line in the sand to officially move away from ineffective and potentially harmful interventions based on an outdated theory of deconditioning.

We see these guidelines as only the beginning, acting as a base from which to explore and research more effective approaches using the wider skillset of a physiotherapist, to ultimately further improve the quality of life of people with ME.

Despite this delay, Physios for ME are continuing to work on our two major projects this year: finishing data collection for our feasibility study and writing our physiotherapy textbook.

We will always aim to promote wider education of the physiotherapy profession in understanding ME and how physiotherapists can provide safe support for this patient group.

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I am so impressed by your thoughts, actions and a brilliant website. Keep going, and let's hope all this gets sorted out very quickly. From Sue, retired physiotherapist because of ME.

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