May 18, 2017
A paediatrics conference hosted today by Royal Devon and Exeter NHS Foundation Trust's South West Paediatric Club has been given the title A Day with the MUPP(ET)S – Medically Unexplained Physical, Psychological Symptoms.
We find it insensitive, offensive and completely unacceptable that children affected by conditions including M.E. be referred to in this way. Our Chief Executive, Sonya Chowdhury, has sent an email to the Trust's Chief Executive, Suzanne Tracey, which is copied below.
UPDATE: The conference organisers have now issued a statement apologising for the title they used. You can read it at www.twitter.com/dvdbartle/status/865169080956977152
Our email to the Trust
It is enormously encouraging to note the Trust’s commitment, via the South West Paediatric Club, to develop clinical skills and best practice around CFS/M.E. and other conditions that have a serious impact on children and young people.
However, as Chief Executive of the UK’s largest charity for children, families and adults with CFS/M.E., I must raise a number of concerns about this event, the most pressing being its insensitive and frankly offensive title.
While I am sure it was not the intention of the Club to cause distress to the parents of children affected by CFS/M.E., my team and I have been contacted by many who are very upset by the use of this inappropriate acronym. One said: “No wonder we struggle to get proper medical care for our children when this is the attitude of the professionals.”
I am also deeply concerned by the inclusion of CFS/M.E. under the “Medically Unexplained Symptoms” banner, and the impact that we beginning to see on people with M.E. as a result of this. We know a number of patients are being challenged by their healthcare professional as to the validity of their M.E. diagnosis, and instead being told that they have MUS.
M.E. is not MUS, and categorising it as such contradicts the World Health Organisation’s International Classification of Diseases, which states that M.E. is a neurological condition. In addition, the NICE guideline for CFS/M.E. makes it clear that specialist services are likely to be needed by a significant number of people with the condition; it is likely that the approach offered by MUS services would be inappropriate in many cases.
Action for M.E. is undertaking a programme of work to increase the knowledge and understanding of primary healthcare professionals. I wonder if I might set up a call with you to discuss how we could work together to support Royal Devon and Exeter NHS Foundation Trust and South West Paediatric Club to improve outcomes for children, families and adults with M.E.?"