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Black MEAction

US: #MillionsMissing Protest Demands

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Overview Ahead of the May 2016 #MillionsMissing protests, members of the US protest steering committee drafted a set of demands to the US government relating to research and medical treatment for ME. After the protest, we solicited broader community feedback via an online survey, which was completed by 191 respondents. The survey ...
miracle-cure

The PACE Trial Fiasco

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This study is the worst kind of science, and noticing flaws does not mean we are sociopaths or psychopaths. Neither does it mean we're close-minded members of a group that's only interested in our own views ...

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Patients’ reanalysis sinks PACE’s “recovery” claims

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Patients and statisticians have used the recently released data from the PACE trial to show that cognitive behavioural therapy and graded exercise therapy did not help patients in the study to recover. Alem Matthees, an Australian patient who obtained the data after a two-year battle over his Freedom of Information request, ...
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Sign the UK and Global Petition: It’s time to stop GET trials for ME/CFS

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After months of hard work from #MEAction, #MEAction Network UK, and many others including advocates, government officials, lawyers, and PACE experts, a group of concerned global citizens have crafted a petition to the UK government to stop graded exercise therapy trials in ME/CFS.  If this petition reaches 10,000 signatures from ...
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QMUL releases the PACE data

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Queen Mary University of London (QMUL) has released the PACE data to a patient who requested it under the Freedom of Information Act, as ordered by a recent tribunal, on the last possible day to lodge an appeal against the court’s order. The move follows the publication three days previously of ...
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Dozens of US representatives support letter to NIH for ME/CFS research

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A total of 55 members of Congress have signed on to a letter asking NIH Director Francis Collins: 1) to consider in a timely manner the input received through the NIH Request for Information, and 2) to update Congress on the NIH's plans for ME/CFS research through 2018. The letter ...
NewLocation

Bateman Horne Center Announces New, Larger Location

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Bateman Horne Center has moved into a new, larger facility; plans to expand staff to accommodate increasing numbers of patients, will increase research enrollment, and is expanding patient and provider education efforts ...
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UK: Tribunal Orders Release of Withheld Data

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This #MEAction in the UK press release on the PACE trial decision was written by a committed team of patient volunteers, and has resulted in much of the press coverage about this important tribunal decision.  You can read the full press release by clicking in the upper right-hand corner of ...

 

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