Forward-ME call for health warning to be put on existing NICE guideline for ME/CFS

A highly influential UK campaign group is demanding that a health warning be put on the existing NICE guideline for ME/CFS – to try and stop more patients being damaged by graded exercise.

Some 24 members of the Forward-ME Group – led by founder The Countess of Mar – have signed up to the statement below.

The Countess of Mar

In it, they say:

“As long ago as 2002, the Chief Medical Officer’s Working Group recognised that ‘substantial concerns exist regarding the potential for harm’ in respect of graded exercise, and that patients reports ‘clearly indicate that the York review results do not reflect the full spectrum of patients’ experience.’

“We do not consider that it is acceptable for this situation to continue unabated pending the publication of the revised guidelines, presently scheduled for April 2021.

“We are aware that the Health Department in Scotland has recently. cautioned against graded exercise ‘therapy’ – see https://tinyurl.com/y5txhdv9 (announcement Nov 2020) and https://tinyurl.com/yyherfp5 (publication August 2020).

We call on the Department of Health to make a similar caution public now in order to help safeguard patients in England.

Forward-ME also note that the existing guideline doesn’t give health or social care professionals the tools they need to comply with a 2015 Supreme Court judgement which made it clear that, in order to obtain informed consent to treatment, patients need to know whether any “material risks” were involved.

“If professionals are unaware that there is potential for harm, how can they possibly furnish patients with the information required to make an informed decision?”

Among signatories to the statement were Dr Charles Shepherd and paediatrician Dr Nigel Speight, who are both medical advisers to the ME Association.

To read what Forward-ME have been doing since the group was founded in 2008, click HERE for their new website.

The two-page Forward-ME Group statement

The ME Association

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