Journal of IiME Volume 3 Issue 1 www.investinme.org Letter from America The Current Situation in the U.S. The agenda includes both the CDC’s 5-year plan and the particular plight of children and adolescents with CFS. Unfortunately, just as parents have had to fight to keep their sick children from being sectioned in the UK, in the U.S. we are seeing too many cases where a child has been forcibly removed from his/her parents and isolated in foster care. Patients both at home and abroad are responding to the current plight of 16-year-old Ryan Baldwin, who has a CFS diagnosis. After being diagnosed with a related heart condition last year, Ryan qualified for social security payments for disabled children. In January Ryan was suddenly taken away to a foster home. His parents were charged with “factitious illness by proxy” and denied access, even by phone. Testimony from noted specialist Paul Cheney proved that the heart condition vacated a diagnosis of “factitious illness.” The authorities then responded by asking the mother to plead to “dependency” [upon her child remaining ill]. She refused, and the court recessed for a month with Ryan still in foster care. We are grateful for a letter sent to the governor of North Carolina by Invest in ME. Anyone interested in helping with the case can find information here: http://cfsknowledgecenter.ning.com/profiles/ blogs/free-ryan-baldwin The situation in the United States remains desperate for many patients, but there is also hope. If emphasis turns from the psychosocial to the biomedical, within five years diagnosable subsets can be identified and begin treatment. We thank Invest in ME for its work in achieving that goal. Invest in ME (Charity Nr. 1114035) The European ME Alliance (EMEA) Its aims are to - • Establish correct recognition of myalgic encephalomyelitis as an organic illness requiring biomedical research to treat and cure • Establish correct diagnosis of patients • Establish specialised biomedical centres for education/treatment/cures NICE COMMENT For (NICE’s Professor Peter) Littlejohns and his superiors to ignore completely how damaging this case (the Judicial Review of NICE guidelines ofr ME) has been to NICE is myopic in the extreme. “The only thing worse than being blind is having sight but no vision.” (Helen Keller) How many more patients will need to challenge decisions by NICE before the government is forced to act and overhaul the management and the objectives of this organisation? An organisation that purports to be “committed to promoting equality, eliminating unlawful discrimination, and actively considering the implications of its guidance for human rights” and yet is taken to court by the same patients for whom it claims to promote good healthcare – this is an organisation that deserves to be overhauled. from – http://www.investinme.org/IIME%20Campaigni ng-NICE-Whats-Next.htm Page 50/76
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