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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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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The Medical Advisor to the ME Association, Dr Charles Shepherd, writes about the importance of blood testing prior to receiving a diagnosis, explains what each test means including for children, and considers when new tests might be necessary… Human blood contains red cells, white cells, platelets and plasma. Red blood cells carry oxygen around the body – so a deficiency
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The CDC multi-site clinical assessment of CFS/ME is now underway, and Bob took the opportunity to interview Dr Beth Unger, the lead scientist in charge. The outcomes of this significant study are likely to be widely influential and the means by which the CDC employ objective measures has become something of a hot potato, especially in relation to exercise testing…
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The IACFS/ME Spring Conference promises to be one of the main events of 2014, and with ‘early bird’ tickets for patients still available, Searcher provides an overview of what we can expect, as well as interviewing the IACFS/ME President, Dr Fred Friedberg, before preparing to attend the conference herself… The 11th biennial IACFS/ME conference will be held in San Francisco
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Mark Berry, Acting CEO of Phoenix Rising, presents our Annual Report for 2013 Phoenix Rising’s board of directors and volunteers were faced with a daunting set of challenges at the start of 2013, following the departure of our founder Cort Johnson. With only a skeleton staff of volunteers, the tasks that lay ahead of us were to stabilize the organization’s
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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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Action for M.E. – the UK’s largest CFS/ME charity – launched a new research strategy in November based on the priorities identified by patients. We asked the Charity’s Chief Executive, Sonya Chowdhury, about the new strategy and also about the commitment to greater patient involvement. By Russell Fleming and Simon McGrath. Charities have always connected with patients – many were
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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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by the Phoenix Rising Content Team Do you ever read a Phoenix Rising article and think, ‘I could write something like that’? Or do you fancy helping articles through the publication process, onto the front page and beyond? Then maybe you’d like to join our Content Team of writers and editors and help produce articles that will be seen here,
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The CDC PCOCA telephone broadcast on 10 September 2013, featured a lengthy presentation from Dr Ian Lipkin who revealed some stunning initial results from the study that is primarily hunting for pathogens in ME/CFS. Simon McGrath and Russell Fleming (Firestormm) review this exciting and possibly game-changing news… Read the full Lipkin Transcript: Here. Dr Ian Lipkin has been a human
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Valentijn sets her sights on the recent NHS ME/CFS and Fibromyalgia online clinic, and targets some of the myths that formed an albeit small part of the expert responses… Between August 14 and August 20, 2013 the National Health Service (NHS) in England hosted an online question and answer clinic in partnership with talkhealth. This clinic invited patients from around
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