Journal of IiME Volume 2 Issue 2 www.investinme.org - GET made worse 48 % - Pacing activity with rest was the most helpful 90 % - Bed rest the most helpful 89 % * 2338 patients (Action for M.E., 2001) - CBT helpful 7 % - CBT not helpful 67 % - CBT made worse 50 % - Activity managment most favourable 89 % - Rest most favourable 91 % * 437 patients (25 % M.E. Group, 2004) - CBT helpful 7 % - CBT not helpful 93 % - GET helpful 5 % - GET not helpful 95 % - Psychotherapy helpful 10 % - Psychotherapy not helpful 90 % - McCully 2005): http://www.dynamicmed.com/content/pdf/1476-5918-4-10.pdf Patients can develop training intolerance, and this is shown by reduced activity level after 4-10 days. The inability to maintain an activity level, caused by worsening of symptoms, suggests that patients have reached an activity threshold. See also a more recent study by Yoshiuchi et. al (2007) which documents increased symptoms following graded excercise http://www.cfidscab.org/rc/Yoshiuchi.pdf It has been shown that patients with ME have increased oxidative stress during excercise, and this increase continues even after the the excercise has been stopped(Kennedy et al. 2005): http://www.cfidscab.org/rc/Kennedy.pdf It is important to note that patients do not protest about treatments which make them better, but they do protest against treatments which either do not work or make them worse. The most helpful was activity managment and symptom control respct. 70 % - 75 % At a conference in Fort Lauderdale, January 2007, Professor Fred Friedberg talked about a two year study in which patients used an actigraph ( pedometer) to register their activity level. The patients reported subjectively increased activity levels, but at the same time the actigraph showed that the number of steps taken sank drastically. The results showed that graded excercise therapy did not lead to improvement in relation to increased total activity level (Friedberg 2002). Physical activity exceeding ”limit/ceiling effect” leads to increased symptoms and deterioration of the condition (Black & Invest in ME (Charity Nr. 1114035) Action for M.E. M.E. in the UK. Severely neglected. Membership survey, 2001. http://www.afme.org.uk/res/img/resources/S everely%20Neglected.pdf Jones DM. Some facts and figures on CBT, GET and other approaches, 2003. http://www.meactionuk.org.uk/SOME_FACTS_ AND_FIGURES_ON_CBT.htm 25 % M.E. Group. Severely Affected ME (Myalgic Encephalomyelitis) Report on Questionnaire, Issued January 2004. (continued on page 63) Page 62/74

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