Journal of IiME Volume 1 Issue 1 (News from USA – continued from page 38) It is a waste time and energy. In addition, we have wonderful independent groups in the US totally devoted to ME. Those involved are sick, they are dedicated and they work. YES! A continuum of thought is as real as the color wheel. Do we say… pink is not a primary color…. OOPS…not allowed? What about sky blue pink? You know exactly what mind image you have of sky blue pink, that hue (s) is not on the color wheel at all. I don’t know how to promote collaborative efforts other than narrow the focus to the basis for all like human endeavors: people in need, people with fractured families, some on the streets need information and help. Many kind people here with CFS work on this every day. We just need a more organized effort and to find ways to help them help others. Thirdly, Chaos creates phantom enemies and it is easy enough for an institution and people to obstruct progress by perpetuating the same old stories. Are there real enemies? I think a combination of factors makes people behave badly and as a result; whole groups suffer with no understanding, let alone help. In addition, people interested in power and establishing an identity through CFS advocacy or CFS research perpetuate chaos because they tend to be exclusive. I mean and whatever My thought would be to ignore anyone who would obstruct by deceit, hostility and engaging in activities to merit a few, not the whole. I would seek out the 100’s of people working for the common good and forget the rest. really sick I am investing in ME by tackling problems in my own back yard. I have to work with what is and we have a long way to go before my ME will be recognized or diagnosed in the United States. I am Investing in ME. The founders, in the right place, at the right time, are bringing order from chaos. What a wonder it has been to watch from afar! HELLO from WISCONSIN and THANK YOU! 39 Story – A Carer of a Person with ME By Greg Crowhurst Caring for someone with severe ME - Five Stark Facts There is no support, there is no cure, there is no treatment, there is no government funded physical research and there is little truth in any of the official policy statements. The scale of the suffering is off the scale. The severely affected will experience not a moment’s relief, and carer are routinely pushed to the limits of human endurance. The severely affected are likely to be experiencing between intolerable symptoms all at once. This pain, paralysis, numbness, sickness, unbearable hypersensitivity and incredible physical disability. Fatigue is not the issue; it is only one symptom among many; Post Exertional Malaise is the major concern. Any exertion is likely to have a shocking after-effect, typically 24 to 48 hours afterwards, which can lead to days, weeks, years of worse symptoms or even death. Invest in ME Charity Nr 1114035 twenty and thirty includes Sufferer’s and carer’s are unwilling pawns in a political game. evidence of powerful There is overwhelming vested financial interests at work, across all levels of government, trying to suppress the physical reality of ME, which is far more prevalent than AIDS or MS. Currently, the main interventions on offer are psychiatric. often for decades on end. Sufferer ME Story My GP thought I had ME but kept saying, work through it, do lots of exercise you'll get over it. They sent me to a sports centre to do a fitness course but I went once and never again. It was about this time I saw the psych and he said there was nothing mentally wrong that feeling well again wouldn't fix - Jas www.investinme.org
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