WHAT THE ICC FAILS TO ADDRESS
by Karina Maier on Wednesday, July 27, 2011 at 6:21pm
While I am very happy about the fact that our specialist assembled and created an International Consensus Criteria I am not so happy with some of the content. On top of the list: the ICC fails to address the fact that a significant number of mothers who are diagnosed with ME/CFS have one or several children suffering also ME/CFS, or other neuro-immune diseases such as Autism, Asperger and so forth.
It is clear that this criteria is supposed to be the first step in establishing a quantitative score for establishing measurable factors that are most relevant to the illness, but I think the fact that SEVERAL family members are suffering from ME/CFS, or other neuro-immune diseases, is very RELEVANT for future research!
If the ICC shall be a guidance for clinicians and future research the disease has to be addressed as for what it is - an infectious disease where often several family members are afflicted by various neuro-immune diseases.
Additionally, the International Consensus Criteria is supposed to be "guidelines specifically for the use of by the primary care physician in the hope of improving rapid diagnosis and treatment by first line medical provider", but it has failed to endorse sufficient recommendation for physicians caring for children with ME.
It is very important to carefully pace mental and physical activities of children suffering of ME and it can not be stated enough: a reduced school curriculum is an integral part of treating children with ME and protects children from further deterioration due to mental and physical overexertion. Recommendation should emphasize a strongly reduced school attendance and reduced school curriculum, avoidance of sensory overload (such as loud class rooms), preventention of exposure to flu out brakes in schools, no competitive sports activities and so forth. In moderate to sever cases school attendance might be not advisable at all. Home schooling, mixed with short school attendance is often a better solution.
There has to be clear guidelines for pediatric physician, general physician, schools, school boards, teachers and any other agency dealing with children. Not only to protect children with ME but also to protect parents from child protective services, who are more often than not miss-informed by miss-informed treating physician, - which leads to the unimaginable tragedies of sick children being removed from parents and placed in foster care, or even mental institutions.
Karina
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