Statement from the 25% ME Group



Support for Severely Affected ME Sufferers

21st November 2008

Due to the recent postings on various Messageboards regarding The Countess of Mar’s recent statements, we would like to issue the following official statement to the ME community:-

We support the Judicial Review into the NICE Guidelines on CFS/ME. Why? Because we want the BEST for ME sufferers, not second best!!

One year ago the 25% ME GROUP released a statement about the release of the NICE Guidelines: “NICE issued their Guideline for doctors in August last year amid protests from patients and medical researchers that they had not followed correct protocols in producing the Guideline. Patient groups fear that some patients could be pressured into accepting treatments which at best may be useless and at worst could cause real harm.”

The 25% ME Group is even more of the opinion the Guidelines are ‘not fit for purpose’. We are also getting feedback from members that they are being told by their GP and/or consultants, that they are relying on the NICE document to guide them regarding providing treatment for the condition. i.e. CBT and GET.

The, so called, ‘positive elements’ of the Guidelines i.e. “Working in partnership with the person with CFS/ME”; “the right to refuse or withdraw from any component of their care plan without this affecting the provision of other aspects of their care or future choices about their care” etc. do not work in practice.

For people with neurological ME, these Guidelines are; ‘not a way forward’; nor ‘the best we can hope for in the meantime’. They need to be challenged in-order to get the ‘best we can’ for ME sufferers!

All people with neurological ME, especially the severely affected can be assured that we do not support the view that CBT and/or GET is an appropriate treatment for anyone with ME, including the mildly and moderately affected.

Simon Lawrence

25% ME Group

support for severe ME sufferers

21 Church Street