Journal of IiME Volume 6 Issue 1 (June 2012) given time. ‘In (ME)CFS, up to 80% of the cells are working’. These lymphocytes and cytokines are so up-regulated that they cannot be driven any harder. It is as if they have been pushed as far as they can go and the immune system is completely exhausted”. At the same conference, Dr Catherine Rivier from the Salk Institute in La Jolla, California, said: “Upregulation of the immune system has been welldocumented in the CFIDS literature….That this immune activation is responsible for many CFIDS symptoms has been accepted by most researchers and physicians. Stress in any form places undue pressure on the immune system….In a normal immune system, interleukin (IL-1) is produced in response to stress. In CFIDS, IL-1 may be obstructed, resulting in a blockage of corticotropin releasing factor (CRF), an immunosuppressor. If CRF is not released, the immune system will remain activated indefinitely” (CFIDS Chronicle: Summer 1993). 1993 “Using the immunophenotypic data presented, we were able to demonstrate that almost 50% of (ME)CFS patients, especially those with severe symptoms, showed signs of CD8+ cell activation and an abnormal suppressor/cytotoxic CD8+ cell ratio. Our observations strongly suggest that a large population of (ME)CFS patients have immunologic disorders and that their symptoms could be explained by a chronic immune activation state (and) that (ME)CFS represents a type of autoimmune disease in which a chronically activated immune system reacts against the host. The 3:1 female/male ratio would not be unexpected: autoimmune syndromes are more common in women. Because of the autoreactive nature of this condition, it might also lead to other immune disorders, such as wellrecognised autoimmune diseases and multiple sclerosis” (Jay A Levy et al. Contemp Issues Infec Dis 1993:10:127-146). 1993 “On past medical history, the only clearly striking finding in our studies is a high frequency of atopic or allergic illness (in approximately 50 – 80%, in Invest in ME (Charity Nr. 1114035) contrast to a background prevalence of about 10% in the population at large)…..Immunological studies suggest that in CFS, the immune system is in a state of chronic activation” (AL Komaroff. Ciba Foundation Symposium 173: Chronic Fatigue Syndrome. John Wiley, Chichester 1993:43-61). 1993 “A dysfunctional immune system may be related to the failure of other organ systems frequently observed in CFIDS….Some CFIDS patients produce very low levels of DHEA (dehydroepiandrosterone, a naturally-produced hormone and a precursor of oestrogen and testosterone in humans….Many CFIDS patients are very sensitive to medications and do not tolerate normally-recommended dose levels. Many drug agents, including DHEA, are toxic to CFIDS patients’ lymphocytes at routinelyprescribed dose levels” (Dr James McCoy from Louisiana; The CFIDS Chronicle Physicians’ Forum, Autumn (Fall) 1993). Two further important points were made in that issue of Physicians’ Forum; Dr Robert Sinaiko from San Francisco mentioned something that is very common but frequently dismissed by uninformed physicians: “Many CFIDS patients experience lower right abdominal pain, which (Sinaiko) hypothesises is mycotic mesenteric adenitis, an inflammation of the lymph nodes in the abdomen as a result of immune activation”, whilst Vicky Carpman pointed out: “Autoimmunity is commonly seen in CFIDS….Once an autoimmune condition begins, it cannot be reversed”. 1993 “What is ME? ME is a potentially severe and chronic condition affecting the immune and central nervous system” (Perspectives -- the magazine of the UK ME Association, September 1993, page 10). 1993 In September 1993 meetings took place at the CDC to review the CFS case definition. A common theme articulated was the urgent need to change the name: “Dr Nancy Klimas (a noted CFIDS immunologist at the University of Miami) www.investinme.org Page 44 of 108
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