Journal of IiME Volume 1 Issue 2 www.investinme.org IiME Comment – NICE Guidelines on ME (continued) Objective: Improving access to appropriate services, and supporting consistent service provision The guidelines provide nothing new for sufferers and carers. Little is given in support of ME/CFS patients in their dealings with DWP staff and no reference is made regarding how ME/CFS patients are meant to deal with the harassment and bias of insurance companies who propose psychiatric treatment for ME/CFS. If the service provision is providing treatments which are unfit for ME/CFS then consistency is meaningless. Result: FAILURE Objective: Emphasising the need for multidisciplinary working These guidelines patently fail to achieve this due to the concentration on psychological therapies at the expense of real research from published biomedical research papers. Although there are a few statements stating that multidisciplinary working is required the bias toward psychological therapies in these guidelines means that there is little credit given to non-psychiatric disciplines in treating and managing ME/CFS. Result: FAILURE Objective: Improving care for patients, particularly for those with severe CFS/ME The guidelines offer little for severely affected. There is no provision for specialist treatment – simply rehashed dogma relating to therapies which are entirely inappropriate for severely (and moderately) affected pwme. There is little here for carers. Result: FAILURE Objective: Providing guidance on ‘best practice’ for children with CFS/ME The guidelines add little new of relevance which doctors would not already know today. The best practice is not psychiatric therapies where the onus is on the patient to attend CBT meetings. It does little to move the debate on for children or their families. No mention of ME being responsible for more school absence than any other illness. Result: FAILURE Objective: Balancing guidance with the flexibility and tailored management, based on the needs of the patients By emphasising GET and CBT as primary treatments it is not possible to state that these guidelines help in basing management on the needs of patients. Its predilection for asserting that activity and exercise help ME/CFS patients already undermines any confidence that the ME/CFS community may have about the impartiality of these guidelines. It fails to recommend prescription supplements which can be tailored to manage symptoms of the illness, based on (continued on page 47) Invest in ME Charity Nr 1114035 Page 46/72 Comments on NICE On 22nd August (2007), the day on which the appalling NICE Guidelines have been published, I just want to congratulate all at Invest in ME for the excellent DVD of the recent Conference. If only the representatives of NICE had bothered to attend and take note, if only the nay sayers who extol the psychosocial paradigm could have the integrity to listen to a much more persuasive argument, then we as sufferers of many years or many decades standing, might be experiencing a much happier and healthier state of affairs now. Let's hope that the call to arms opined by many of the speakers who gave their time and wealth of knowledge at the Conference can now be realised in terms of pressure from those who truly understand this illness to ensure a volte-face by those who pretend they do yet are blinkered by their own egos' and self satisfied aggrandisement. - Rosie Comments on NICE Good things in the NICE guidelines... "Healthcare professionals should be aware that - like all people receiving care in the NHS - people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care. ". - Joss

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