wendy ME Advocacy a e1424740812191

MEAdvocacy.org Update and a Call for Continued Support

Gabby Klein reports on news and updates from MEadvocacy.org …  “I have tried raising money by asking for it, and by not asking for it. I always got more by asking for it.”- Millard Full ME Advocacy has been very busy implementing new projects and are seeking your continued support for their upcoming projects. Thank you for your support of MEadvocacy.org.

pixabay yes no maybe

The Call for Opposition: Challenging the P2P and IOM Processes

In our second article on how to react to the publication of the draft P2P report, Gabby Klein provides her view of why she and a large group of advocates and patients are continuing their protest of the government’s ongoing control and manipulation of our disease via their processes of the P2P and IOM.  In yesterday’s piece, Clark Ellis critiqued and praised elements in

Ellen Wright Clayton Vanderbuilt Univerity Paediactrics

Institute of Medicine (IOM) Review of ME/CFS Clinical Definition: First Open Meeting

Gabby Klein provides a useful summary of what was a very important, and quite extensive, IOM open meeting. US Government representatives, patient organizations, advocates and individual patients all made formal presentations… The Institute of Medicine (IOM) has been formally engaged by the US Department of Health and Human Services (HHS), to complete a review of diagnostic criteria and available evidence, for the


The Panel is out – What Now? December 23rd Deadline for Public Comments on IOM Panel

Ahead of the December 23rd deadline for public comment on the proposed IOM panel to create clinical diagnostic criteria for ME/CFS, Gabby Klein reviews the continuing opposition to the HHS/IOM Contract and the more favorable response from some ME/CFS organizations, and offers her personal take on the controversy. While the mounting questions regarding the HHS/IOM contract have continued to grow

Mary Dimmock CFSAC1

International experts speak out against the IOM contract to determine clinical diagnostic criteria

Mary Dimmock reviews a most welcome announcement from our expert clinicians and researchers who have urged HHS to adopt the Canadian Consensus Criteria and save money by cancelling the contract with the Institute of Medicine… On September 23, 2013, the US Department of Health and Human Services announced that it had entered into a contract with the Institute of Medicine

Thomas Hennessy Jr

In memoriam: Thomas M Hennessy Jr.

Gabby (Nielk)  pays her respects to fellow ME patient and staunch advocate Thomas Hennessy Jr. who died earlier this month. Rest in Peace at last, Thomas. A little over a week ago, on September 9th, the international Neuroimmune Disease (NEID) community was shaken by the news that well known and warmly respected patient advocate Thomas Hennessy Jr. had died. “A former

Secretary Sebelius

Patients to DHHS: Cancel the IOM Contract!

Gabby (Nielk) reviews the shennanigans employed by the DHHS recently to try and blindside us with a new clinical definition for our disease; and explains how you can help stop them… International Call for Action: Your community needs you! Everyone: please email HHS today and every day till September 30th – see draft below US Citizens: please email your Congressional

cfsac members August 20131

Talking with CFSAC – Views from the other side of the table

Gabby (Nielk) looks at the background to The Chronic Fatigue Syndrome Advisory Committee (CFSAC) and interviews 5 members including the Chairman…  “Any committee is only as good as the most knowledgeable, determined and vigorous person on it. There must be somebody who provides the flame.” Lady Bird Johnson The mission of the U.S. Department of Health and Human Services (HHS)