Journal of IiME Volume 2 Issue 1 www.investinme.org ME Story I have lived with severe M.E, and a lot of ignorance and prejudice, for 13 years. On many occasions I have been told that there is nothing wrong with me, I am just trying to get attention, or that I am too lazy to do anything. My response is, that if I was going to "fake" being ill then I wouldn't choose an illness where I was going to be disbelieved, ignored, treated badly by most people, loose all of my friends and have my family reject me! - Sarah The International ME/CFS Conference 2008—Sub Grouping of/Treatments for ME/CFS John Herd is a passionate spokesperson and crusader for patients' rights. He has been called a "veteran advocate" by the CFIDS Association for faithful attendance at major conferences, and is "on a first-name basis with most of the pioneers" in ME/CFS research and patient care I'm delighted to read that the International ME/CFS Conference 2008 has chosen its theme to be Sub Grouping of/Treatments for ME/CFS. In the end of the 90's Lenny Jason and I encouraged the then operational health department's Name Change Workgroup (NCW) to include in its recommendations a call for a system of sub-grouping patients. Although sub-grouping had been very briefly mentioned in a few journal articles, the subject had been given almost no attention. Chief Medical Officer ‘..there is a paucity of good research evidence and very little research investment for a serious clinical problem that in likelihood has a pervasive impact on the individual and the community. Insufficient attention has been paid to differential outcomes and treatment responses in children and young adults, the severely affected, cultural, ethnic and social class groupings.’ – The CMO Working Group on CFS/ME 2002 In the years since the NCW distributed its recommendations there has been somewhat increased talk of the importance of sub-grouping, but there remains no standardized system of sub-grouping patients my biologic test results and/or symptom presentation. In research presentations researchers present stratified subgroups of patients based upon the specific data they are testing for. Because there is no standardized system of sub-grouping patients, it is often difficult to compare the results of studies or to know if studies are comparing similar populations. Development of a standardized sub-grouping system would alleviate the problem of different researchers applying differently the various research diagnostic criteria and even applying single criterion differently. Such a system may also help us get beyond the logjam of differing views about what is M.E. and what is CFS as our science progresses. John Herd Invest in ME (Charity Nr 1114035) Page 9
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