Today an announcement went out about a new US Action Working Group which has been formed with the intent of increasing impact in advocacy efforts, with allowance that some of the group’s members can opt in or out of different projects. MEadvocacy was recently invited to join this group.  Our advisors spent several days in communication with the organizations and individuals clarifying the plans involved in defining this group. After much deliberation, we decided we will better serve the ME patients that we represent by continuing as we have in the past, therefore we opted out of the group.  We will continue with our stated mission and pursue our declared goals of advocating for ME criteria (CCC or ICC or better) to be used for diagnostic and research criteria in the US, as well as urging the NIH to fund ME research to the order of $250 million a year which is commensurate with other similarly burdened diseases.  This has been our direction from the start; being a voice for the myalgic encephalomyelitis community, with a strong focus on the severely affected.

  The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS). It meets twice a year.  The last meeting took place August 18 and 19, 2015. The theme of the meeting was HHS’ response to the Institute of Medicine (IOM) and Pathways to Prevention (P2P) reports on redefining ME/CFS.  A CFSAC working group was created to work on recommendations for these reports which were presented at the meeting.  Tackling all the recommendations and information provided at the meeting would be too long to include in one blog.  Since we believe that the diagnostic and research criteria are a crucial element, we decided to concentrate on the recommendations which reference the criteria. Continue reading

Image courtesy of Justice for Karina Hansen   Article reposted with kind permission from the ME Global Chronicle 10-7-2015 p.102 The charity Save4Children has been created by the editors of the ME Global Chronicle (http://www.let-me.be) and helps parents whose children have been forced into psychiatric wards by authorities, to try and set them free by legal procedures, if the parents have proven to be incapable of affording needed legal assistance. Continue reading