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Guideline delay questioned on Today programme

August 18, 2021

Interviewed on BBC Radio 4’s Today programme this morning (listen again online from 07.53) our Chief Executive Sonya Chowdhury urged the National Institute for Health and Care Excellence (NICE) to publish its new guideline for the diagnosis and treatment of M.E./CFS without delay.

Yesterday, just hours before publication was due, NICE issued a statement saying it was “pausing” the guideline “because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.”

Refuting a claim by Dr Alastair Miller, also interviewed by Today host Sarah Smith, that the opposition to graded exercise therapy (GET) and cognitive behavioural therapy (CBT) comes from a small number of patients and charities, Sonya explained that the embargoed guideline did in fact retain CBT but “acknowledges that CBT is not curative; it has a place in supporting people to live with the illness, and cope with the symptoms but is not a curative treatment. And it’s not just patients and charities that are saying we don’t want it – the evidence shows that it is not effective.”

Responding to the idea that GET and CBT are the only effective treatments, and without them patients will be left without nothing, Sonya said:

“We frequently hear from children and adults who have been made worse by GET, but also those who have been able to better manage this life-changing condition because their GP listened to them and worked with them to manage symptoms through careful energy management, which is what the draft guideline recommends. This guideline was produced on the back of evidence, by an expert committee, who worked for three years and responded to every single piece of consultation, including from the Royal Colleges. We just don’t understand why the guideline has been delayed now.”

This reiterates our joint Forward ME statement released yesterday, and shared by BBC News and the Guardian, which says: “The guideline removes support for therapies driven by outdated views regarding treatment for M.E. which are no longer supported by the science. We understand these new guidelines may take time to become accepted by elements of the medical community, but they should not be delayed.”

Asked if we are any closer to a curative treatment, and not just symptom managed, Sonya replied:

“There is nothing available at the moment in terms of a curative treatment, and that’s because of the woeful lack of investment over many, many years. We are calling for more biomedical research so that eventually people with M.E. can have the treatment they deserve.”

In his response for a Science Media Centre expert reaction on the guideline delay, Prof Chris Ponting, with whom we co-lead DecodeME, the world’s largest DNA M.E. research study, says: “The new guidelines should receive support from both professionals and patients alike. NICE took due care and attention developing these guidelines in a process lasting four years. It applied rigorous methodology, for which it is world-renowned, and recruited highly regarded professionals and lay people to the review panel. Consensus decisions were taken by the panel for a much improved set of guidelines. It would be understandable if implementation of the completed guidelines takes additional time to put new practice in place.”