Category: United States

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NIH Long COVID research lacks clear plan to identify and track ME/CFS

MEAction has written to the National Institutes of Health (NIH) expressing our deep concern that the RECOVER Initiative research agenda lacks a clear plan for how to accurately identify or consistently track the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases among patients with Long COVID. This is of particular importance because a sizable fraction

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The Last Two Years Changed the World…

What a year 2021 was! People with ME have always faced formidable challenges: every day combatting stigma, lack of understanding from clinicians, NIH’s and CDC’s low budgetary commitments, and a world of challenges navigating disability on top of symptoms.  It’s no exaggeration to say that 2020 and 2021 changed the world – and the world of chronic,

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CDC decides not to publish flawed ME/CFS treatments review!

As we enter the holidays we have a positive development to report coming out of yesterday’s ME/CFS stakeholder call with the U.S. Centers for Disease Control and Prevention (CDC). CDC has announced that it will not publish a systematic evidence review of ME/CFS treatments by the Oregon Health Science University Evidence-based Practice Center (EPC) in

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CDC must act now to stop flawed review of ME/CFS treatments

In advance of next week’s CDC ME/CFS Stakeholder Engagement and Communication (SEC) call, #MEAction has sent a letter to Chronic Viral Diseases Branch Chief Dr. Elizabeth Unger requesting her to clearly and directly address our four key objections to publishing a flawed evidence review of ME/CFS treatments that CDC commissioned. Read Letter The review wrongly

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NPR Features #MEAction in Series about Long COVID

NPR featured #MEAction in an article about long COVID called, “For patients with long COVID, chronic fatigue syndrome may offer a guiding star.”  MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, speaks about how long COVID researchers and doctors must learn from the ME/CFS community. “People with chronic complex disease have been living with

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#MEAction’s work in the Forest of Federal Agencies

Hey folks, it’s me Ben. During this week’s #MEAction Giving Adventure we moved through the Forest of Federal Agencies as we surpassed our first fundraising level of US$15,000/UK£11,178. While this fundraising adventure is all about putting the FUN in Fundraising, the work #MEAction has done within US Federal Agencies has been imperative to improving the

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Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

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Sign on to #MEAction’s response to flawed CDC review

MEAction Response to CDC #MEAction has released a draft response to the CDC’s flawed systematic evidence review on ME/CFS treatments. Sign our form by August 15, 2021 to have your name added to #MEAction’s response before we formally submit it as a public comment on August 16. We need to demonstrate strong community opposition in

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CDC releases post-COVID guidance: 4 takeaways for ME/CFS

The U.S. Centers for Disease Control and Prevention (CDC) has published interim guidance for evaluating and caring for patients with post-COVID conditions.* The CDC will present this guidance to clinicians on a public COCA Call on Thursday, June 17th from 2:00 PM – 3:00 PM ET. This guidance deserves a detailed review of what has

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