Journal of IiME Volume 1 Issue 1 INFORMATION ON ME/CFS by Margaret Williams (updated) April 2007 ME/CFS is a complex, whole body systemic disorder and it is difficult to compile a unified reference list of the documented biomedical abnormalities, immunological, neurological, endocrinological, gastro-intestinal, reference papers themselves overlap considerably. ocular, cardiovascular, respiratory etc). since so many medical disciplines are involved (eg. musculo-skeletal, The The biomedical reference papers now number over 4,000 and some of these reference papers are listed in 92 pages of references online at http://www.meactionuk.org.uk/SUBJECT_INDEX.htm. The few illustrations below provide indisputable evidence of organic disease, thereby demolishing the psychiatric lobby’s assertions that there is no such evidence. The reference papers can be broadly categorised into the following sections and it is necessary to be familiar with all sections. HISTORICAL PAPERS ON ME These date from 1957 -- 1980 and include excellent clinical descriptions, laboratory-determined abnormalities and post-mortem findings. GENERAL PAPERS ON ME/CFS These papers cover more than one aspect of ME/CFS and include for example evidence of impaired oxygen delivery to muscle; evidence of delayed recovery from fatiguing exercise and documented symptoms commonly found in ME/CFS (which number over 60). LABORATORY FINDINGS IN ME/CFS Although there is as yet no single, specific, definitive test for ME/CFS (which is also the case in numerous other medical conditions including multiple sclerosis), nevertheless there is an entirely consistent and reproducible pattern of laboratory-determined abnormalities which have been observed and documented worldwide. Such abnormalities particularly include dysfunction of immunological, cardiovascular, pulmonary and cognitive parameters. QUALITY OF LIFE IN ME/CFS One international ME/CFS expert writes that in his experience, ME/CFS “is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages”. Australian research describes ME/CFS patients as suffering more dysfunction than multiple sclerosis sufferers; the sickness impact profile (SIP) is more extreme than in end-stage renal disease and heart disease, and only in terminally ill cancer patients has the overall SIP score been found to reach that found in ME/CFS. neurological, neuro-endocrinological, musculo-skeletal, 42 American research found that the quality of life in patients with ME/CFS is significantly, particularly and uniquely disrupted, and that the illness causes marked disruption and devastation. Scandinavian research has shown that patients with “non-visible” disability suffer more stigmatisation than those with visible disability. CHRONICITY AND SEVERITY OF ME/CFS This section provides evidence of the natural history of severe ME/CFS, showing that the prognosis is extremely poor for the severely ill subset, with no symptom improvement (only 4% recovered) and it shows symptom patterns in longduration ME/CFS. PRECIPITATING FACTORS IN ME/CFS The syndrome is known to be related to a dysfunctional stress response, and there is evidence that precipitating factors include physical trauma (specifically a breakdown in the blood-brain barrier) and critical life events. Other factors include infections; anaesthesia; immunisations and exposure to certain chemicals. (continued on page 43) Invest in ME Charity Nr 1114035 www.investinme.org
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