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Category Archives: CDC

We need Effective, Strategic, and Respectful Engagement from CDC

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On June 3rd the CDC held its latest MECFS Stakeholder Engagement and Communication (SEC) Webinar/Conference Call with the ME community. The need for change in the CDC’s stakeholder engagement meetings has been a long time coming. However, this Monday, the majority of the call was a presentation comprised of simple ...

A Year in Review: Celebrating the 2018 Achievements of Our Community

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2018 has been a big year at #MEAction!  Thank you to all of you who have put forth immense efforts to improve the lives of people with myalgic encephalomyelitis (ME). #MEAction has grown over the past year in leaps and bounds, and we cannot wait to do more. We will not end ...

Advocacy Round-up – A Season of Protest and Petition

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The #MEAction community has dug in deep this fall to undertake the incredibly important work - and heavy lifting - of ensuring that our health agencies create guidelines that will improve the lives of people with ME. We are holding our government officials accountable for their decisions that affect our daily ...

Sept & Oct — Research Roundup

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The end of September was a whirlwind! Between the CDC's website work, the CDC's awarding of a sole contract, the planning sessions for the NIH meeting, and the Stanford symposium, there wasn't much time to devote to breaking down the science.  If you'd like to see a quick run-down of ...

Alphabet Soup: Read the Latest about our U.S. Health Agencies and M.E.

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There are a lot of moving pieces to keep track of as we push for our U.S. federal agencies to provide fair and adequate treatment to people with myalgic encephalomyelitis (ME). Together, our community continues to take action to fight for our lives, and we’re seeing the fruits of that ...

It has been an Intense Week!

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It Has Been A HUGE Week in the U.S.! This last week has been a bit of a whirlwind – we've never been busier! It's been a week of advancing the cause of health equality for people with myalgic encephalomyelitis through the launch of the Unrest continuing medical education program and the expansion of our US ...

CDC Update: NYS Dept. of Health and #MEAction Bid for Contract

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On August 27th, #MEAction published a petition calling for the U.S. Center for Disease Control and Prevention (CDC) to immediately halt its plan to issue a sole-source contract - meaning there was no true competitive bidding process in place - to the Pacific Northwest Evidence-based Practice Center (EPC) for conducting ...

#MEAction Sends Recommendations to CDC to Update its ME Website

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This past July, 2018, the U.S. Center for Disease Control and Prevention (CDC) launched new webpages about myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) geared to practitioners. ME advocates, clinicians and researchers had provided feedback about updates to these pages but not all of their recommendations were taken on board. As a result, ...

Alphabet Soup – Your Guide to Current U.S. Actions

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When it rains, it pours! There has been so much activity in our US health institutions that it’s easy to lose track. Here’s a handy update to help us all keep it straight. HHS (Health and Human Services) The HHS recently and without warning shut down CFSAC, the Chronic Fatigue Syndrome Advisory ...

Stop CDC from Hiring Shoddy Contractor for ME Treatment Guidelines!

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PETITION UPDATE (Tuesday, September 11, 2018) The CDC has posted an updated, competitive bid solicitation for the development of federal treatment guidelines for ME. The community outcry, and over 8,000 petition signatures, protesting the previous rigged, sole-source contract got the CDC's attention. Yet the solicitation is still only open through Thursday, September ...