Journal of IiME Volume 1 Issue 1 ME News from USA – Pat Fero – Wisconsin ME Group Investing in ME…from the other side of the pond By Pat Fero, MEPD I live In Wisconsin, which is the other side of the pond, and a few Great Lakes over to the Midwest, USA. It is only though information technology that I know about Myalgic Encephalomyelitis in 2007. When I first saw the words Encephalomyelitis, synthesize medical understanding of CFS issues. Myalgic I did not search with fervor to information into my growing Despite working as Executive Director of the WISCONSIN CFS ASSOCIATION and being on the Board serving in one capacity or another since 1987, it was 2003 or 2004 before I began to look at ME. Why is that? This is the landscape question, the backdrop for what follows, that is, my perceptions about ME and about CFS in the United States. Humans learn best when they have a need to know about a thing. When that happens they are ready to ask questions. Here in US, the need to know about ME exists with a few vocal advocates and people who have quietly investigated ME for the sake of “name change.” Within that group, controversy rages, but that is the only place CFS diagnosed patients give ME an iota of thought. Why is that? First, I believe that in the United States, with about 300 million people and a land area of over 9 million square kilometers, we do not have a CFS community. To foster community development that would create a shared understanding of CFS would mean organized education, awareness and advocacy. If we had a community, the vast numbers of diagnosed CFS patients would be far greater than a mere 20% of an estimated 800,000. By far, the majority of people ill have no diagnosis or are misdiagnosed. That being the case, MD’s and other medical professionals have little need to know about CFS and the few of us presenting in the doctors offices can easily be disregarded. In fact, sweeping CFS into a larger entity of fatigue and pain is the logical outcome. Investing in research centers to study pain mechanisms and fatiguing illnesses, denies the integrity of CFS. Integrity? Historically, ME has integrity as a distinct illness entity with diagnostic criteria until issues Invest in ME Charity Nr 1114035 muddled when the US became international researchers and MDs. involved with is a THIS generalization and an oversimplification. However, we can cite the mid 1950’s work of Melvin Ramsey and John Richardson. in CFS as a distinct illness entity with diagnostic criteria is impossible. I agree with Dr. Byron Hyde that once the Centers for Disease Control became involved in the Lake Tahoe epidemic, outbreak, incident and finally non entity, patients in the US suffering from ME, were left to wander about until the powers that be met in 1988 to label their illness chronic fatigue syndrome. In 1988, where I live, there was integrity in CFS. By this, I mean that my communications were with 100’s of people who had like illness experiences. 5 years and many 100’s of calls later, I knew that the “CFS” experience changed. Much later, I found that my perceptions were correct. The CFS pain and fatigue waste bin was huge as was my familiarity with lists of co morbid psychiatric conditions that heard of until the mid 90’s. In 2000, in WISCONSIN, our CFS organization decided that our mission of education and awareness was too narrow. What was the topic? How could we sort out this waste bin of misdiagnosis, over diagnosis and under diagnosis? What a mess. On a national level with a small group of people compared to the potential whole, we are a huge dysfunctional family. Bitter, personal tiny issues signals the loss of hope to stop the CFS nonentity spiral. I see ways to stop enabling and perpetuating chaos. In the US, community. first, we must work on developing CFS This means a massive information campaign in 52 states. Because our public health institutions are in the middle of the Chaos, the effort has to start grassroots from people like me and the wonderful people in Atlanta and Northern Virginia and Vermont and Chicago and…and. We cannot forget about the people in Wyoming or Montana or anywhere else where the population density is so low that we might think that sick people do not count. Secondly, I believe that existing US national, state organizations and regional groups must be inclusive to promote collaborative efforts that will stop sick people from reinventing the wheel. (continued on page 39) www.investinme.org I had never In contrast, looking for integrity 38 infighting over
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