Journal of IiME Volume 2 Issue 1 www.investinme.org WHO GETS ME AND WHY - The role of impaired capillary blood flow in ME (continued) responded to one of the oils, with a restoration of a nearnormal lifestyle. My responses to such messages emphasise the need to persist with the effective treatment, while at the same time recognising that they are not cured and are still at risk. THE IMPORTANCE OF LIFESTYLE IN ME Even though persistent tiredness is a daily problem, it has to be accepted that long-term bed rest will have an adverse effect on muscle function. For that reason the daily programme should include provision for a period of low-intensity physical activity, such as walking 50 yards up the street and back again. Each week the distance walked should be increased, maybe in concert with an increase in speed. An interesting observation relating to a daughter with fibromyalgia was that when she was immersed up to her chin in a warm physiotherapy pool, the buoyancy provided by the water allowed her to do arm and leg exercises that she could not do on dry land. ME people should not get involved in arguments and they should walk away when they see stressful situations developing. Both arguments and stress may raise the blood levels of altered cells sufficiently to cause a relapse Give careful consideration to the nature of your diet. High levels of fat and cholesterol increase the stiffness of red cells. vegetables and of oily fish. tin of sardines in oil two or three times a week. Because low temperatures have an adverse influence on blood viscosity, it is important to dress warmly and if possible spend your time in a warm room. THE ORIGINS OF THE DATA ON WHICH MY CONCEPTS REST According to the entries in my daily diary, between January 1991 and December 2000, I spoke to 274 meetings in six countries. Although the great majority were ME groups, in the USA and Canada, I met CFS and CFIDS groups also. groups were included. From about 1997, fibromyalgia Either during such visits or later, arrangements were made for an experienced venepuncturist to collect 5 drop blood samples which were mixed immediately with fixative When the samples had been evaluated, reports were prepared and submitted for publication. However, reports submitted to Australian, New Zealand and South African journals were rejected. After giving an illustrated lecture to an ME audience in Victoria, British Columbia, I was approached by Dr.Abram Hoffer who introduced himself as the editor of the Journal of Orthomolecular Medicine. He invited me to submit a written version of the talk he had just heard. So in early 1997, a paper titled, “Myalgic encephalomyelitis (ME): a haemorheological disorder Invest in ME (Charity Nr. 1114035) manifested as impaired capillary blood flow,” was published. (J Orthomol Med 1997; 12: 69-76). Later in that year I was able to publish the red cell shape analysis results of blood samples from 1558 female and 620 male members of ME organisations in four countries. (J Orthomol Med 1997; 12 221-6) The numbers involved in that report are so large that it would be strange if the data were not relevant. In other reports I have summarised the information provided by 632 Americans with chronic disorders, and the red cell shape analysis results. In addition there is a report relating to the blood samples from 623 women with fibromyalgia, who resided in four countries. An intriguing aspect of that report is that the blood samples showed similar high values for flat cells to those of people with chronic ME. However, an analysis of the symptom lists showed that the first recorded symptom by the majority of ME people was tiredness, whereas in the fibromyalgia group the first symptom was pain. CONCLUSIONS What began as a study of various aspects of the blood in ME people finished up as a study of the red cell shape populations in a wide range of chronic disorders. In Try and increase your dietary intake of green If this is too expensive, have a those disorders which have been studied by SPECT scans, the reported reductions in regional cerebral blood flow were consistent with the expected effects of shapechanged, poorly deformable red cells. So ME is only one of many chronic disorders with changed red cells which will impair capillary blood flow. It would seem that ME is unique insofar as the factor or factors responsible for the changes in red cell shape, can switch off. During the resulting remission, red cell shape populations return to normal. Unfortunately, at this time, there is no diagnostic feature which can identify the group identified by Ramsay as having unremitting ME. Even though many different factors may initiate the blood changes which are typical of ME, it needs to be emphasised that the baseline changes may be increased by secondary factors which alter the internal environment, such as emotional stress or physical overactivity or hormonal changes as in the pre-menstrual week. Such changes will precipitate relapses. In addition, the immune response to inoculations, vaccinations or other infections will worsen the severity of symptoms and the level of body dysfunction. While the search for the primary problem continues, in order to improve the quality of life of sufferers, urgent attention is needed to define the actions of agents which can improve the deformability of red blood cells in order to provide an effective treatment. However, because of the official reluctance to investigate the pathophysiology of ME, sufferers may need to explore the potential benefits of those agents which will improve red cell deformability, on their own initiative. (Continued on Page 32) Page 31/34
32 Publizr Home