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.
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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
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Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients … Thirty years of neglect, incompetence and malfeasance by the Department of Human services (HHS) have rendered ME patients
ContinueGabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest … Right after I wrote this article, the draft review was made public HERE. We have started a thread HERE on Phoenix Rising in order to discuss this review. The review in its final form will be the evidence
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Gabby Klein considers the efforts Dr. Enlander has gone to to ensure that the reality of ME/CFS is presented to the world at large, and gives us an insight into his opinions on some current issues, including an update on the formation of an academy for ME and CFS physicians, announced recently at the Institute of Medicine meeting during his
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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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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) 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
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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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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)
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