Journal of IiME Volume 1 Issue 2 www.investinme.org IiME Comment – NICE Guidelines on ME (continued) By pre-determining a view that CBT and GET are the most useful therapies NICE has shown itself as disingenuous – an organisation that is not interested in really helping people with ME/CFS. Compare the NICE guidelines for ME/CFS with the NICE guidelines for other neurological illnesses such as MS and Parkinson’s etc. • • For MS [CG8 Multiple Sclerosis NICE] there is no recommendation for GET for patients. For Parkinson’s [CG35 Multiple Sclerosis NICE] there is no recommendation for CBT or GET! Also, • • For Dementia [CG42 Dementia NICE] – no recommendation for GET for patients. For Epilepsy [CG20 Epilepsy NICE] – no recommendation for GET for patients. This questions the impartiality of NICE and shows a disturbing bias behind the recommendations made in the NICE guidelines. In reviewing the stated objectives with the guidelines IiME conclude that none have been satisfied. Objective: Increasing the recognition of CFS/ME The guidelines provide nothing new for patients and carers. The few places where the document has requested that healthcare professionals take the illness seriously and that the recognition of this is paramount are good. However, essential research showing the multi-system nature of ME/CFS is not discussed – enteroviruses, orthostatic intolerance, oxidative stress etc. – none of these are allowed to be discussed in detail. Yet without a basic understanding or awareness of the pathology of the illness how are healthcare staff supposed to recognise the true nature of ME/CFS? Result: FAILURE Objective: Increasing the recognition of ME/CFS can only be achieved by increasing the knowledge of the illness itself. The recommendations that propose non-functional and biased psychiatric therapies as a management technique will lead to more harm and probably contribute to fostering even more antagonism between healthcare staff (especially those who are untrained in ME/CFS) and the patient/carer. NICE have deliberately ignored essential biomedical research which would undoubtedly increase knowledge of healthcare staff on the multi-system pathology of this illness. Result: FAILURE Objective: Influencing practice in the ‘real world’ By stating that CBT and GET are the most useful therapies NICE has shown itself unwilling to move the issue of ME/CFS into an area which offers any real hope of progress. These guidelines will not influence Invest in ME Charity Nr 1114035 practice but will lead to already established myths being perpetuated. The absence of emphasis on the lack of funding for biomedical research into ME/CFS will not help to alter the government’s position on this subject and therefore gives little to change the current unsatisfactory position where patients are given possible harmful GET. The guidelines will not inform healthcare staff of the missing link in research into ME/CFS – funding for biomedical research. The guidelines show little awareness of biomedical research being carried out or performed in the past. They fail to mention the links between ME/CFS and vaccines, epidemics or organo-phosphate poisoning. They should include references to new research so that healthcare staff can be aware of the overwhelming evidence of the neurological origins of this illness. The guidelines state that a patient/carer can refuse any therapy without it impacting the relationship with the healthcare practitioner(s). We hope this is so but we are afraid that it will not. In the face of insurance companies forcing ME/CFS patients to undergo potentially harmful GET or useless CBT or DWP procedures to prove they are ill due to the lack of acceptance of the authenticity of the illness then we doubt if these guidelines are forceful enough to influence the ‘real world’ and avoid this from happening. In such instances recourse to litigation may be the only possibility for ME/CFS patients. It might have been useful for these guidelines to detail what avenues are open for legal aid for ME/CFS patients who wish to challenge insurance companies and others who insist on ME/CFS patients undergoing GET or CBT against their will. The guidelines do little to influence ‘real world’ issues when they avoid recommending prescription supplements or complementary therapies which are known to help. The guidelines do little to influence ‘real world’ issues such as the frequent need for parents to battle with schools for the rights of their children with ME/CFS. Result: FAILURE Comments on NICE I am an M.E sufferer who has made a remarkable recovery and it certainly was not brought about by CBT and graded exercise - quite the opposite. If I have made errors along the way, I would say it was being treated with anti-depressants and trying to exercise in the early stages – Judy Page 45/72 (continued on page 46)

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