NIH To Shift Funding Priorities: Will ME/CFS Benefit?
December 21, 2015
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The NIH is changing how it decides to fund research. Will it benefit ME/CFS?
Author: #MEAction
Davis, Tuller, Racaniello, and Levin issue FOI request for PACE data
December 17, 2015
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Yesterday four scientists, led by world-famous geneticist Professor Ronald Davis, added to the pressure for scientific transparency on the PACE trial by making a request for raw data under the Freedom of Information Act. Davis was accompanied in his request by biostatistician Professor Bruce Levin and immunologist Professor Vincent Racaniello, both of Columbia University, and Dr.
Tell Congress to Increase ME Funding
December 17, 2015
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Have you always wanted to email your Congressmen/ women about ME/CFS but don’t know what to say? Or maybe you’re too sick to draft a letter? We’ve made it easy! Just go to the listed website and copy and paste the sample letter!
PLOS One posts "notification" of intent to evaluate James Coyne's PACE data request
December 16, 2015
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PLOS One today published a statement that its staff were evaluating Professor James Coyne’s request for data from a PACE trial paper published in the journal in 2012. Professor Coyne said on social media that the move “represents progress”. King’s College London had denied Professor Coyne’s request on behalf of the study authors and had
What the CDC needs to know about the $5.4 million funding restoration
December 16, 2015
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In a budget agreement announced early Wednesday morning, funding for the US Centers for Disease Control’s (CDC) ME/CFS program was restored to the full $5.4 million. The omnibus budget bill is expected to pass both houses on Friday. CDC funding for ME/CFS had previously been cut to $0 in the proposed 2016 budget. [pullquote align=”right” cite=”” link=”” color=”” class=””
“Vexatious”: King’s College London dismisses James Coyne’s request for PLOS One PACE data
December 12, 2015
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Professor James Coyne’s request for the dataset used for a paper about the PACE trial in the journal PLOS ONE was rejected on Friday as “vexatious”. King’s College London (KCL), acting for the PACE authors, wrote to Professor Coyne that they considered that there was “a lack of value or serious purpose to [his] request”,
Study shows Epstein-Barr virus can infect human neurons
December 10, 2015
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A new study has found that two human herpesviruses: Epstein-Barr virus (EBV) and Kaposi’s sarcoma-associated herpesvirus (KSHV), previously only proven to infect B cells, can also infect neurons. For years there has been indirect evidence that gammaherpesviruses like EBV and KSHV could infect nervous tissue. For example, EBV viruses have been found in the cerebrospinal fluid and brain tissue
Charles Shepherd: It's time for doctors to apologise to ME patients
December 7, 2015
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[pullquote align=”full” cite=”” link=”” color=”” class=”” size=””] “I left medical school believing that ME was not a real disease and I would probably never see a case. I was wrong” [/pullquote] In this excellent piece in Monday’s Daily Telegraph, Dr. Charles Shepherd describes the history of ME’s neglect and says it’s time for doctors
James Coyne to PLOS One: Don’t let PACE make a mockery of data sharing
December 6, 2015
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Professor James Coyne yesterday posted online his letter to PLOS One complaining about the PACE authors’ failure to provide him with data from a paper published in the journal. Coyne’s letter was premature because he had been misinformed that he would receive a response within 20 days rather than 20 working days. However, it indicated
We Succeeded in Removing NIH CBT and GET Advice
December 3, 2015
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NIH has now removed its Medline/ National Library of Medicine (NLM) article promoting CBT and GET for ME/CFS treatment. It was taken down just DAYS after we began filing complaints. I received a response from NLM explaining that they “removed the article since it did not provide a balanced view on the topic.” Although the