Category: Press releases

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#MEAction Swinging Through The Press Jungle

Welcome to the jungle, the press jungle! It’s hot and noisy here, with news fresh off the press. Trying to get the attention of the media is not as impossible as legend had it! This is Adriane, and as your Press Scribe, I’m here to write our way through this next adventure and make sure

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Thousands living with chronic illness ME are listened to after years of fighting to be heard – Press Release

Press Release After 14 years of recommending graded exercise therapy to people with myalgic encephalomyelitis (ME), the National Institute for Health and Care Excellence (NICE) has removed this harmful treatment from its new guideline on ME/CFS, released today. Sian Leary, spokesperson for #MEAction UK, highlights the importance of the new guideline: “This is a huge

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Where Does Your Donation Go?

Do you ever wonder where your money goes when donating to your favorite charity? We certainly do! Why? Because we want to make sure that every gift we receive generates the greatest impact in our collective fight for research, medical education, and public recognition of myalgic encephalomyelitis/chronic fatigue syndrome. This is why we wanted to

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Fury as NICE cancels publication of finalised ME/CFS guideline

There is widespread anger in the ME community today as NICE announced that it will not be publishing their finalised guideline on ME/CFS after pressure from sections of the medical establishment. At #MEAction UK, we are furious that NICE have capitulated to vested interests of those who support graded exercise therapy instead of defending their

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#MEAction Sends Press Release About #MillionsMissing

#MEAction sent out a press release last week to alert media to the #MillionsMore developing ME following COVID-19.  We invited 651 journalists in the U.S and 552 journalists in the U.K. to join our #MillionsMissing event this Wednesday, May 12th.  Before COVID-19 long haulers there were the #MillionsMissing… Read the US Press Release Read the

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Screenshot showing 4 of the panelists on a Zoom screen with a red paly button in the middle and the MEACtion logo in the corner

Telebriefing was a success!

We were thrilled at the outcome of the #MEAction press briefing last week where we invited a panel of experts to discuss the intersection between long COVID and myalgic encephalomyelitis (ME) to the media. The panelists made it crystal clear that a subset of long haulers are meeting the criteria for ME, and that it

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Headshots of panel with wording to the side about date and time.

Press Telebriefing: long COVID & ME

When: Thursday, March 25, 12 p.m. PT / 3 p.m. ET  Contact: Adriane Tillman, #MEAction, press@meaction.net  MEDIA Advisory: A Panel of Experts to Explain How Long COVID Intersects with ME/CFS    On March 25, #MEAction will host a telepresser featuring a panel of experts who are uniquely positioned to speak to how long COVID is

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Meet the Long Haulers Developing ME/CFS

#MEAction sent out a press release last week to 300 major publications in the US introducing them to the long haulers who are experiencing symptoms of myalgic encephalomyelitis (ME), specifically post-exertional malaise. We alerted the press to the terrifying possibility that 1 million more Americans could develop ME following COVID-19 at the current rate of

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