‘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 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.
The guideline committee’s development group are still looking for a paediatric nurse but the remaining positions have been allocated and the process has started. The bias of the development group towards those endorsing the BPS model of ME, which is responsible for the current guidelines, is clear and extremely concerning. It seems illogical and unethical for the development group to be packed with proponents of a psychological model for ME, rather than the neurological condition defined by WHO, especially given they have a vested interest in maintaining the status quo as many of them are BPS researchers, actively promoting GET and CBT as treatments for ME (8 of the currently appointed 13 core members fall into this category). This calls into question NICE’s independence and ethical stance and suggests the results of the review have been predetermined and that it is merely a paper exercise used to silence patients following the outcry over the flawed PACE trial. Moreover, this latest research shows NICE will not be presented with accurate information with which to make an informed decision in any event. 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
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.
Joanne Bond-Kendall:Currently runs a trial on CBT/GET called FITNET with Esther Crawley and authored this paper recommending CBT/GET 
Tony Crouch: Social Worker advises 25% ME group. No conflict of interest.
Gabrielle Murphy:Author of the now discredited PACE trial testing CBT/GET. 
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 
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 composition of the Guideline Development Group we have little faith in the process NICE are undertaking 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 fails to address the harm caused by GET and CBT.