Journal of IiME Volume 1 Issue 2 The Reality and Nature of ME/CFS (continued) Gastro-intestinal dysfunction: There is evidence of objective changes, with delays in gastric emptying and abnormalities of gut motility; there is evidence of swallowing difficulties and nocturnal diarrhoea; there is evidence going back to 1977 of hepatomegaly, with fatty infiltrates: on administration of the copper response test, there is evidence of post-viral liver impairment -- an increase of at least 200 in the copper level is the expected response, but in some severely affected ME/CFS patients the response is zero; there is evidence of infiltration of splenic sinuses by atypical lymphoid cells, with reduction in white pulp, suggesting a chronic inflammatory process; there is evidence that abdominal pain is due to unilateral segmental neuropathy (Gastrointestinal Manifestations of Chronic Fatigue Syndrome: H Hyman, Thomas Wasser: JCFS 1998:4(1):43-52); Maes et al in Belgium have found significant evidence that people with ME/CFS have increased serum levels of IgA and IgM against the LPS of gram-negative enterobacteria, indicating the presence of an increased gut permeability resulting in the autoimmmunity seen in many ME/CFS patients; this indicates that the symptoms of irritable bowel seen in ME/CFS reflect a disorder of gut permeability rather than psychological stress as most psychiatrists believe (gastrointestinal problems are a serious concern in ME/CFS, and 70% of the body’s immune cells are located in the GI tract) Reproductive system: There is clinical evidence that some female patients have an autoimmune oophoritis; there is evidence of endometriosis; there is evidence of polycystic ovary syndrome; in men with ME/CFS, prostatitis is not uncommon Visual dysfunction: There is evidence of latency in accommodation, of reduced range of accommodation and of decreased range of duction (ME patients being down to 60% of the full range of eye mobility); there is evidence of nystagmus; there is evidence of reduced tracking; there is evidence of problems with peripheral vision; there is evidence that the ocular system is very much affected by, and in turn affects, this systemic condition. The above list is by no means comprehensive but merely gives an overview of documented abnormalities seen in ME/CFS that can be accessed in the literature, as well as in the abstracts and reports of international Clinical and Research Conferences [http://tinyurl.com/3xocuc]. This was an extract from the document “CORPORATE COLLUSION?” which may be found at the ME ACTION UK site at http://tinyurl.com/2wxsb8. Invest in ME Charity Nr 1114035 Page 37/72 www.investinme.org ME Parent’s Story We feel this improvement has emerged because of our developing confidence in being able to reject medical approaches to Suzy's severe ME, and to the departures we chose to make from these conventional treatments. For example: 1. No longer trying to wake Suzy twice a day. This was a very difficult decision, which we knew would be a controversial one. But the fact that after a few months she managed her hour awake without us having to sit silently beside her, and that the hour ceased to be broken, reassured us that we'd done the right thing. 2. Forgetting about the concept of 'graded exercise' We were certain that the graded exercise program Suzy followed in the early stages of her ME was a big mistake. We had no hesitation in no longer sticking to any kind of graded exercise routine (which might be beneficial for those patients with less severe ME). Instead we took the approach of letting Suzy do what she felt she could do----- which for nearly two years was nothing at all. This is a second option we are convinced we made the right choice over. 3. Stopping the involvement of psychologists A third decision we know to have been the right decision, was to stop the involvement of psychologists in an illness we are convinced is not psychological. 4. Choosing to see less (which eventually became nothing) of doctors. We eventually accepted that to us, the only safe path was to manage Suzy ourselves by following our own instincts. We had become more and more sure that Suzy needed as much of a stress free environment as possible; an environment we tried to ensure she got. - Parents of Suzy (UK person with ME)

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