Journal of IiME Volume 2 Issue 2 www.investinme.org 20) in the use of AGREE INSTRUMENT (Appraisal of Guidelines Research and Evaluation, the AGREE Collaboration, Sept. 2001). Costing report The cost of these treatment strategies is based on assumptions, which the costing report says in the introduction. In addition the report comments on excisting uncertainties in the diagnosis and treatment of patients with CFS/ME. The high costs are expected to become even higher than estimated. The British organisations are questioning these costs for interventions which don’t have documented effect, and which the ptients themselves don’t want, at the same time when official bodies don’t prioritise biomedical research. Legal evaluation The critique of the NICE guidelines for ME/CFS was taken to High Court in the Royal Courts of Justice on June 17 2008. Two named persons act as litigants. The judge concluded that there are grounds for a full hearing. It is estimated that the hearing will take at least two days. The date has not determined, but expected soon. (Editor: the date is set for 11 and 12 February 2009) There is diminishing trust in NICE within the British population because its decisions are constantly criticised and challenged. One questions its evaluation process and whether some distinct groups are disadvantaged by the process. There is a separate report where a wide range of patient organisations, among others cancer and multiple sclerosis organisations, Alzheimer’s Society and many other organisations for neurological and autoimmune conditions, have come forward with searing critique of NICE’s conduct and evaluations process. (House of Commons Health Committee: National Institute for Health and Clinical Excellence (NICE). Written evidence. HC 503-II. 17. May 2007). Invest in ME (Charity Nr. 1114035) Facts on ME Thyroid malignancy in ME/CFS patients greatly exceeds the normal incidence of thyroid malignancy in any known subgroup. The thyroid malignancy incidence in the ME/CFS group may exceed 6,000 / 100,000. As part of their investigation, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) patients should be examined by thyroid ultrasound for evidence of thyroid pathology and malignancy. Thyroid pathology may be missed in this group of patients if investigation relies only upon serum testing for TSH, FT3, FT4, microsomal and thyroglobulin antibodies, which are usually normal. Thyroid uptake scans tend also to be normal and may also miss malignant lesions. A newly recognized syndrome may exist in ME/CFS patients characterized by: (a) thyroid malignancy, (b) persistent abnormal cortical and subcortical SPECT brain scans (NeuroSPECT), (c) failure of thyroidectomy surgery and hormone replacement to correct the fatigue syndrome, and (d) an unusual high incidence of cervical vertebrae osteoarthritic changes. ME/CFS patients with treated non-malignant thyroid disease and abnormal NeuroSPECT scans may also fail to improve despite adequate thyroid hormone replacement. From Thyroid Malignancy Association with Cortical & Subcortical Brain SPECT Changes In Patients Presenting with a Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. AJ38-2 Hyde MD, Byron Leveille MD Jean Vaudrey, Sheila Green, Tracy Page 64/74
65 Publizr Home