Advocacy issues in chronic fatigue syndrome (ME/CFS)
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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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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The WHO ICD featured recently in an online article (since withdrawn), which heightened patient concern over what might happen when the current ICD-10 is finally revised.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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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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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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Tom Kindlon has been nominated in two categories for his herculean efforts with regard to health activism on the internet and in particular his work in disseminating the reality of the PACE Trial and GET/CBT as ‘effective’ treatments for ME/CFS. By Firestormm. The other day, I happened to notice a link posted on the Phoenix Rising Facebook page to the
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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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Gabby (Nielk) presents a nightmare vision of what the future might hold for ME/CFS patients in the US, if the Institute of Medicine (IOM) contract to redefine ME/CFS turns out as badly as many patients and advocates fear. Imagine that you magically wake up to a day in October of 2015. Unfortunately you are still ill with ME/CFS and it’s
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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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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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Mark Berry invites readers to join 11 organizations and 31 advocates and write to the CDC, asking them to include appropriate medical tests in their multi-site study. The historical approach of the US Centers for Disease Control and Prevention (CDC) to the study of ME/CFS has not been universally well-received – and that’s an understatement. The majority opinion of the
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by Ryan Prior On June 10, I announced in USA Today that I am setting out to write and co-direct a documentary film — The Blue Ribbon — on ME/CFS with my girlfriend, Nicole Castillo, who is a filmmaker with a special interest in medical and social justice projects. I am a writer and researcher who has had ME/CFS for over six
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