NICE Review of CG53

‘Exercise therapy shouldn’t be done as it makes patients worse’ Prof Maureen Hanson

After significant patient pressure, NICE have finally decided to review the ME/CFS guidelines (CG53) going against the recommendations of the royal colleges who deemed the guideline adequate.

It is anticipated that the review will be completed by 2020. Although the guideline is being ‘teared up and started again’ according to Prof Mark Baker, Guidelines Director, NICE have refused to withdraw the recommendation of Cognitive Behavioural Therapy and Graded Exercise Therapy in the meantime leaving patients vulnerable to more harmful treatment.

After an initial consultation period, NICE have produced the Final scoping document  and here are the Scope Comments and feedback  from stakeholders.

The guideline committee’s development group are still looking for a paediatric nurse but the remaining positions have been allocated and the process has already started. The bias of the development group towards those that endorse the biopsychosocial model of the illness which is responsible for the poor guidelines we already have is extremely concerning. It seems illogical for them to be on a development group for an illness that isn’t psychological and that they have a vested interest in keeping the status quo rather calls into question NICE’s independence and ethical stance. Details of these conflicts of interest and bias follow:

Chair: Peter Barry Consultant Paediatric Intensivist, University Hospitals of Leicester

Vice Chair: Ilora FinlayConsultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales, Velindre NHS Trust, Cardiff

Core members

Theo Anbu: Consultant general paediatrician and lead for paediatric CFS/ME, Alder Hey Children’s NHS Foundation Trust, Liverpool. Currently treats children and adolescents with CBT/GET and believes children get better with these treatments.

Michael Beadsworth:Authored this paper [1] with Alaistair Miller who believes that CBT/GET is evidence based and worth using as treatments [2]

Joanne Bond-Kendall:Currently runs a trial on CBT/GET called FITNET with Esther Crawley and authored this paper recommending CBT/GET [3]

Dr Chris Burton: Is an author with Prof M Sharpe (author of the PACE trial) on this paper testing CBT [4]. He is currently involved in setting up a clinic for chronic fatigue [5]

Tony Crouch: Social Worker advises 25% ME group. No conflict of interest.

Jo Daniels:Works in Bath University where Esther Crawley’s CBT/GET clinic is based and authored these papers on anxiety in CFS/ME treated with CBT [6] [7]

Gabrielle Murphy:Author of the now discredited PACE trial testing CBT/GET. [8]

Luis Nacul: GP Leads UK ME Biobank. No conflict of interest.

Alan Stanton:Paediatrician that received a serious complaint to the GMC in 1997 after referring a child with ME to the child protection service as referred to in this Panorama programme [9]

Susan Watson:Physio working at the Leeds clinic that provides a psychological approach to ME. 

Caroline Kingdon : Research nurse, london school of Hygiene and Tropical Medicine

Jennifer McIntosh : Senior specialist dietician Mill Lodge CAHMS, Leeds and York partnership NHS Foundation Trust

William Weir : Physician with an interest in ME. No conflicts of interest

Community Paediatric Nurse : To be appointed

5 lay members 

Co-opted members (no voting rights): Charles Shepherd, ME Association

Given the makeup of the Guideline Development Group we have little faith in the process NICE are taking and deem this as a window dressing exercise. Patients deserve a transparent and honest process, many more years of suffering will continue for patients if NICE fail to address the harms of GET and CBT.