Journal of IiMER Countess Mar Fane Mensah (PhD student, UCL) Representatives from Invest in ME Research Apologies: Dr Nigel Speight CMO Scotland CMO Northern Ireland CMO Wales Prior to the meeting the charity had submitted two documents to the CMOs and participants. One concerning children and the deplorable state that exists as well as case studies of children badly affected by the way that the existing mentality toward ME is allowed to distort proper healthcare. In this document evidence was presented to the CMO of the way many families of children with ME are being harassed and subject to child Protection proceedings. Though the establishment organisations have totally failed children with ME the harassment is not, however, confined to vulnerable patients or their families either - as witnessed by this story - (http://investinme.org/IIME-Newslet-1604NS999.shtml). The following document had also been sent prior to the meeting to all attendees - Summary of developments following CMO’s report of 2002 It was agreed that the meeting would take an informal format to allow free discussion and the available agenda would be used as guidance. It was mentioned that Invest in ME Research had sent in information beforehand to allow the CMOs time to familiarise with the issues on the agenda. Dr Radford said she had read the information given and stated that the CMO could not resolve most of the problems mentioned as the CMO’s remit had changed and many of the issues mentioned would be the responsibility of NHS England. She would, however share the notes with other www.investinme.org CMOs in Wales, Scotland and Northern Ireland. The charity pointed out that the CMO’s remit includes influencing policy and that from experience it seems that ME is not on the CMO’s radar. The charity mentioned that the previous and current CMOs had never accepted the charity’s invitations to attend or speak at the international conferences that the charity had organised in the past 11 years. The invitation was always either too early or too late. There never seemed to be a right time and this sent a message to patients, carers, researchers and doctors interested in ME that ME was not on the CMO’s agenda. The charity explained that the meeting was taking place and as far as we were concerned, we were talking directly to the CMOs of the UK. The charity asked directly whether the CMO was happy with the current status of ME research and what was their official opinion on ME? Dr Radford stated that she could not speak for the CMO and she made the point once again that the CMOs of England, Wales, Scotland and Northern Ireland do not run the NHS. It is the NHS England that runs the services and we would need to discuss these matters with them. The CMO’s relationship with the NHS and remit has changed since 2002 when the 2002 CMO report on CFS/ME was published. Parameters have changed and now the CMO’s remit is to give broadly advice to the government. The charity read out the publicly stated remit of the CMO such as protect the public, tackle inequality, review policy (mentioned no policy for ME), influence by statements and discussions. CMO Remit Countess of Mar said Dr Martin McShane makes nice noises but nothing happens. The charity described cases provided in the accompanying document where severely ill children with ME who failed to recover with Page 37 of 82
38 Publizr Home