Journal of IiME Volume 1 Issue 2 www.investinme.org IiME Comment – NICE Guidelines on ME (continued) the needs of the patient. There is nothing flexible with the continued advocacy of useless or dangerous psychiatric therapies. Result: FAILURE Objective: Facilitating communication between practitioners and patients, and their families or carers. The emphasis on psychological therapies posing as treatments using heavily skewed data will inevitably influence GPs and paediatricians – especially if they have little time available for ME/CFS patients. The subject matter is skewed to allow a multitude of fatigue-related patients to be included in this study. If it purports to be for ME/CFS then the studies need to use patients with ME/CFS – not CFS or other fatigue conditions. Result: FAILURE By pre-determining the result based on its requirements to view this illness as a broad chronic fatigue illness NICE has failed to grasp the reality, failed to analyse and use proper research, failed to respond to patients’ demands and requirements and produced a document that will continue to allow this illness to be blended into a nebulous fatigue syndrome which only benefits psychiatrists interested in funding of their projects and other organisations who depend for their existence on paying members. NICE call for “Avoidance of dogmatic belief in a particular view.” Yet this is itself hypocritical and biased as all of the evidence and recommendations made by NICE are using psychiatric paradigms for treatment. The MRC has failed to fund biomedical research yet has paid millions of pounds for trials of psychiatric therapies. Could one foresee any progress being made, for example, in understanding MS if all research was performed on coping strategies for MS sufferers? NICE have demonstrated no vision, no ideas and, seemingly, no wish to progress the treatment and perception of ME/CFS. The official NICE guidelines for ME/CFS are a mediocre effort by an organisation which again fails the people for whom it purports to provide instructions and information. One can only ask was it sensible to have these guidelines made at all at this stage without better analysis and research? If much of the evidence was of poor quality then perhaps these guidelines are premature. IiME believe, however, that there is much research which NICE, if genuinely interested in progressing the treatment and perception of ME, could have used to improve knowledge and treatment of this illness. These guidelines have taken over two years to prepare and it will be another two years before they are revised. Invest in ME suggest they should be revised immediately.♦ Invest in ME Charity Nr 1114035 Facts About ME “We need more research to understand the various subgroups of CFS and to discover treatments that address the true biologic underpinnings of this illness. We need to educate health care professionals about this illness and keep at it until every doctor (and) nurse can quote the diagnostic criteria”. “We know that (ME)CFS has identifiable biologic underpinnings because we now have research documenting a number of underlying pathophysiologic processes involving the brain, the immune system, the neuroendocrine system and the autonomic nervous system”. - From “The State of (ME)CFS Research” by Professor Nancy Klimas, University of Miami Medical School From “Fast Facts: Top Ten Discoveries about the Biology of (ME)CFS” by Dr Christopher Snell-University of the Pacific 1. (ME)CFS is not a form of depression and many patients with (ME)CFS have no diagnosable psychiatric disorder. 2. There is a state of chronic, low-grade immune activation in (ME)CFS. 3. There is substantial evidence of poorly functioning NK cells. 4. Abnormalities in the white matter of the brain have been found. 5. Abnormalities in brain metabolism have been discovered. 6. (ME)CFS patients have abnormalities in multiple neuroendocrine systems in the brain. 7. Cognitive impairment is common in (ME)CFS patients. 8. Abnormalities of the autonomic nervous system have been found, including a failure of the body to maintain blood pressure, abnormal responses of the heart rate and unusual pooling of the blood in the veins of the legs. Some studies also find low levels of blood volume. 9. (ME)CFS patients have disordered expression of genes that are important in energy metabolism. 10. There is evidence of active infection with various herpes viruses & enteroviruses in (ME)CFS patients. Other infections can also trigger (ME)CFS, including the bacterium that causes Lyme disease. Page 47/72

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