Journal of IiME Volume 1 Issue 2 www.investinme.org IiME Comment – NICE Guidelines on ME In August the National Institute for Health and Clinical Excellence (NICE) published their official document for clinical guidelines. The document was developed for use in the NHS in England and Wales regarding chronic fatigue syndrome / Myalgic Encephalomyelitis (CFS/ME). After almost universal criticism of the draft guidelines from ME patient groups in the UK the guidelines were intended to be revised. IiME was not original stakeholder (IiME only became a charity in May 2006) but became a stakeholder on October 2006 and have submitted our response to the draft guidelines. We have analysed the official guidelines and the summary below is from our response (which can be seen from this address http://tinyurl.com/25wtjq). Background: Invest in ME (IiME) is a UK charity of people with Myalgic Encephalomyelitis (ME/CFS) or parents of children with ME/CFS. The work we perform is unpaid and voluntary and the charity has no paying subscribers. We therefore are independent and do not have any ties to, or receive any finance from, the NHS or from government departments which could influence our opinions when analysing these guidelines. Invest in ME have examined the Full version of the NICE guidelines for CFS/ME (covering ME/CFS patients). IiME’s review is available at http://tinyurl.com/25wtjq In the Preface Professor Richard Baker states that “The publication of this guideline presents an opportunity to improve care for people with CFS/ME. “ That was a very true statement. It is a sad failing of NICE, however, that these guidelines fail to grasp this opportunity and instead deliver a weak and ineffectual document that seemingly attempts to retain much of the ignorance and prejudice existing within healthcare provision for ME/CFS. IiME believe these guidelines provide little to further the treatment of ME/CFS and this is an opportunity missed. The NICE guidelines lack any vision in moving forward the treatment of people with ME/CFS. NICE have chosen only to use the evidence which satisfied a predetermined view – • • • that CBT and GET are preferred methods of treatment for ME/CFS that there is doubt about the true nature of ME/CFS that CFS incorporates ME/CFS within its catchment The remit for NICE was documented at - (http://guidance.nice.org.uk/download.aspx?o=111640) and this was already limiting in deciding the end product– "To prepare for the NHS in England and Wales, guidance on the assessment, diagnosis, management of adjustment and coping, symptom management, and the use of rehabilitation strategies geared towards optimising functioning and achieving greater independence for adults and children of CFS/ME.” Invest in ME Charity Nr 1114035 Baker states that - “In developing the guideline, we kept in mind the overall goal of improving care for people with CFS/ME, that is, improving diagnosis, enabling patients to receive therapy appropriate for, and acceptable to them, and providing information and support, with the patient’s preferences and views firmly driving decision-making. “ Yet how can diagnosis be improved if NICE refuse to adopt consistent, standard guidelines and deem diagnostic tests to be out of scope? NICE have ignored the overwhelming evidence showing the organic nature of the illness and use a deplorable spin on the facts which does not serve ME/CFS patients, their families or healthcare staff who are genuinely interested in helping. The end-result seems to be an exercise in producing a pre-determined view of ME/CFS from an official organisation, supposedly independent, yet who seemingly have little conscience for the effects their document will have on patients and their families. The views of most ME/CFS support groups show that ME/CFS must be seen as a distinct and separate illness from CFS. The guidelines are quite biased and narrow-looking which mix far too many illnesses and attempt to subjugate ME/CFS into a bag of common illnesses all falling under the term CFS. This, we feel, is part of the problem faced by healthcare staff and others – by broadening the view of what ME/CFS is it will inevitably dilute the requirements for diagnosing and treating ME/CFS patients. NICE have done a major disservice to people with ME/CFS who are needlessly suffering from the perceptions of a systemically-biased health service which maintains outdated views with little good scientific evidence. The NICE guidelines fail to deliver in the areas of epidemiology, diagnosis, terminology, treatments and potentially cause infringement of human rights. (continued on page 45) Page 44/72

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