The ME Association has today launched a national petition that aims to demonstrate to NICE (National Institute for Health and Care Excellence) that people with CFS/ME are not happy with the current guideline or the way in which the current review is being conducted.
Recently Dr Charles Shepherd learned that NICE were likely to recommend ‘no update’ to the current guideline. A two-week consultation begins today, but rather than it being part of a full review, it seems likely that NICE will be asking stakeholders to just comment on their ‘no update’ recommendation.
The ME Association has long held that the current guideline is not fit for purpose, and, especially in light of this recent news, many others appear to agree. We decided therefore that a petition might be a constructive way to demonstrate to NICE just how unhappy people were.
As well as adding your name to the petition – which we hope you will – you are also able to add any comments you feel appropriate. We have tried to express the main points of contention we have with the current guideline, and what we feel should be happening, but you may want to say something different.
The ME Association, along with other ME/CFS charities and support groups, are stakeholders in the guideline review process. We will let you know what the consultation is all about and how we are responding to it in a later blog, but in the meantime we will keep the petition open until Monday 17th July.
Dr Shepherd will aim to present the petition to the NICE committee for delivery to Sir Andrew Dillon (chief executive of the NICE guidance executive). It is our hope that even if the consultation does result in no update to the current guideline, NICE will be left in no doubt as to the feelings of those affected by M.E. and that we might then also use the petition in our other lobbying efforts.
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