MEcvs Vereniging

Science to Patients: Talking ME, Exercise and the Mitochondria – with Dr Charles Shepherd

The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014… ME/cvs Vereniging launched a series of broadcasts from expert clinicians and researchers in January 2013, as part of a government subsidized project called, “Science to Patients”. Each expert

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W. Ian Lipkin

The Lipkin Microbiome Crowdfunding Campaign Launches!

An ambitious $1.27m international, patient-led fundraising campaign storms into action. Sasha invites you to join it!​ This week sees the launch of a major new crowdfunding campaign: the Microbe Discovery Project. The campaign aims to raise $1.27 million (£760,000; €910,000) by 31 December 2014 to fund world-famous virus-hunter Dr. Ian Lipkin’s ground-breaking study of ME/CFS and the gut microbiome –

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World Health Organization

Embracing Change – ME and the International Classification of Diseases

The WHO ICD featured recently in an online article (since withdrawn), which heightened patient concern over what might happen when the current ICD-10 is finally revised. N.A.Wright provides a timely summary of this international classification system, considers some of the issues surrounding the existing and proposed listing, and calls on our advocacy organisations to get involved… The World Health Organization

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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

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HaveYourSay

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

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contract

Death Contract? ME/CFS Experts and Advocates Unite to Oppose US ‘Case Definition’ Contract

Mark Berry asks why the US HHS contract with the Institute of Medicine (IOM) to re-define ME/CFS has provoked such an unprecedented storm of protest, and explores the reactions of patients, organizations, experts and bloggers to the so-called ‘Death Contract’. On September 23rd, 2013, the US Department Of Health and Human Services (HHS) made an announcement that was to send

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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

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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

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