Journal of IiME Volume 2 Issue 1 www.investinme.org WHO GETS ME AND WHY INTRODUCTION The role of impaired capillary blood flow in ME By Les Simpson There is no doubt that one of the major problems facing those who suffer from myalgic encephalomyelitis (ME) is the persisting disagreements about the name of the disorder. To a great extent this was exemplified by a group in Florida who decided to change CFS to ME. For that reason alone it is important to recognise Ramsay’s concept of ME so that those with the problem can be identified and separated from other illnesses such as chronic fatigue syndrome (CFS) and post-viral fatigue syndrome (PVFS). Until this happens, ME people will continue to be disadvantaged. In the preface to the second edition of his book, “Myalgic encephalomyelitis and postviral fatigue states,” published in 1988, Dr.Ramsay wrote, “When on the occasion of a recent ITV programme on the subject of myalgic encephalomyelitis, an immunologist stated that ‘ME and PVFS are regarded as synonyms’ I realised that my objection to the latter term was fully justified and that it was incumbent on me to show that such a statement is blatantly untrue.” He stated also, “The clinical identity of the myalgic encephalomyelitis syndrome rests on three distinct features, namely: 1. a unique form of muscle fatigability whereby, after even a minor degree of physical effort, three, four or five days, or longer elapse before full muscle power is restored; 2. variability and fluctuation of both symptoms and physical findings in the course of a day: 3. an alarming tendency to become chronic.” In the text, Ramsay discussed the multiplicity of symptoms in three groups. 1. Muscle phenomena. He noted, when discussing the time for the restoration of normal muscle power, “…it is important to stress the fact that cases of ME of mild or even moderate severity may have normal muscle power in a remission.” 2. Circulatory impairment. extremities and facial pallor. This was manifested as cold 3. Cerebral dysfunction was manifested in many ways including memory problems, difficulties with concentration and emotional lability. It seems rather surprising that Ramsay did not link the dysfunction of muscles and brain to the recognised problems of circulatory impairment. He stated however, “The chronic case can take two different forms. remission and relapse. In the first there is a recurring cycle of In three doctors who contracted the infection between 1955 and 1958, the alternation of remission and relapse continues. second form is more tragic and no remission occurs.” The It is clear that remissions play a large part in Ramsay’s concept of ME. The introduction, by the Centers for Disease Control in Invest in ME (Charity Nr. 1114035) the USA, in 1988, of the term chronic fatigue syndrome (CFS), almost immediately made life more complicated for ME sufferers, as the criteria for CFS were much more inclusive. Not only were ME patients gathered under the CFS umbrella, but also the results of Americans studying CFS tended to be adopted as being relevant to ME, and to a large extent Ramsay’s experience was ignored. In most countries, despite the opposition of small groups, ME people were diagnosed as having CFS, even though there were no accepted (Continued on page 25) Page 24/34 Leslie Owen Simpson currently lives in Dunedin, New Zealand, but has lived in 6 countries and from 1991 travelled and lectured extensively. He graduated from the University of Otago, majoring in botany and zoology and later worked in the field of tissue transplantation. He became a WHO lecturer in medical biology at the Central Medical School, Suva, Fiji, with a brief to establish a medical biology department and train technical staff. After a spell in teaching he was appointed research officer in the Pathology Department, Otago Medical School, studying the pathobiology of the first animal model of lupus erythematosus, the NZ Black Mouse. After a postdoctorate in experimental pathology he worked as a senior research officer. Although retired in 1985 he has continued to work full time in unpaid appointments as honorary research fellow, first in the Pathology Department and then in the Department of General Practice. In 1999 he set up Red Blood Cell Research Limited and continued his research on red blood cells and privately funded much of the research. He has had 125 letters or articles published in medical journals as well as numerous other articles in journals and textbooks.
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