Journal of IiME Volume 7 Issue 1 harm), it is also necessary to become their protector. This serious illness is very misunderstood, even by doctors. Society as a whole has a very misguided view of M.E. and so the carer has to do all they can to keep this harmful ignorant tribal thinking from entering the world of the M.E. sufferer. They need to protect their healing space from influences, opinions and 'treatment' that will cause disease progression and maybe even death. But who protects the carer? In some ways the carer is as vulnerable as their loved one. If a doctor does not respect a patient's choice of treatment, they can send in the heavy mob – social services. It's not just children with M.E. that this happens to but adults too. Adults, like Sophia Mirza, who are completely of sound mind are threatened or taken away from the safety of their home and family. Another way to force the seriously ill person to tow-the-line is to go after their carer. A doctor can say anything they want. They are believed because of their social standing. People with M.E. don't seem to have the right to choose their treatment like other seriously ill people do. This can be a lonely and difficult journey for the M.E. person and their carer to travel. Together they travel, often feeling alone, often feeling vulnerable, feeling ignored and misunderstood, feeling isolated from a world they once knew. But this world no longer recognises them, no longer understands their plight, their sorrows, their torment, their daily struggle. They are outcasts. “Doctors and healthcare workers need to be reeducated, and the media and general public need correct and truthful information. People need to know... because M.E. isn't fussy who it attacks next." My hopes and prayers are that things will change for the better for the M.E. community and their carers. New M.E. biomedical centres with specialist training for healthcare workers would be a good start. I wholeheartedly support Invest in ME and their campaign to create a centre of excellence which is much needed not only for those with myalgic encephalomyelitis, but for society as a whole. Doctors and healthcare workers need to be reInvest in ME (Charity Nr. 1114035) (May 2013) educated, and the media and general public need correct and truthful information. People need to know... because M.E. isn't fussy who it attacks next. ME QUOTES Ann Epidemiol. 2013 Jun;23(6):371-376. doi: 10.1016/j.annepidem.2013.04.003. The adoption of chronic fatigue syndrome/myalgic encephalomyelitis case definitions to assess prevalence: a systematic review. Johnston S, Brenu EW, Staines DR, MarshallGradisnik S. Griffith Health Institute, School of Medical Sciences, National Centre for Neuroimmunology and Emerging Diseases, Griffith University, Parklands, QLD, Australia. CONCLUSIONS: Advances in clinical case definitions during the past 10 years such as the Canadian Consensus Criteria have received little attention in prevalence research. Future assessments of prevalence should consider adopting more recent developments, such as the newly available International Consensus Criteria. This move could improve the surveillance of more specific cases found within CFS. http://www.ncbi.nlm.nih.gov/pubmed/23683713 ME QUOTES "It is of the greatest importance to keep in mind the goal toward which one works in science, but it is also of equal importance to simply explore and define the 'new' while keeping that mind well prepared for finding new treasures.It is only through such efforts that we believe the etiology of CFS will be finally illuminated." Steven Tracy and Nora Chapman, University of Nebraska Medical Center: http://bit.ly/11Xs9MA www.investinme.org Page 20 of 36
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