Category Tag: awareness

FullSizeRender-2

Support Tom’s London Marathon campaign for ME Research U.K.

/ by / 0 Comment
On 23rd April, Tom Whittingham is running the London Marathon for ME Research UK. Watch and share his fundraising and awareness video ...

“Unrest” premieres in Copenhagen to major media coverage

/ by / 0 Comment
There is one more screening of Unrest at the CPH:DOX film festival on March 24th, and then Unrest heads to the RiverRun International Film Festival in Winston-Salem on March 31st. Unrest made its international and European premiere in Copenhagen, Denmark at CPH:DOX, one of the leading festivals for documentary film in the ...

Julie Rehmeyer: Hope and Despair in Through the Shadowlands

/ by / 5 Comments
Recently, #MEAction sat down with Julie Rehmeyer to discuss her new book Through the Shadowlands, her op-ed in the New York Times with David Tuller, and next steps. What made you embark on a project like Through the Shadowlands? I’m a writer, and it was a big experience I was going through, ...

The Cut

/ by / 0 Comment
Are you prepared for an 18% reduction in ME spending? I’m not. For one thing, the first year of funding for the new Collaborative Research Centers is set aside in this year’s budget. But all bets are off going forward. Like many other RFAs, the one for ME Centers explicitly states, ...

Australia: government refuses to stop funding trial focused on GET/CBT

/ by / 0 Comment
An Australian university is trialling a program to train health professionals in administering graded exercise therapy and cognitive behavioural therapy to roll it out nationally and internationally, despite the evidence of harm. Here is the response to a petition to ask them to stop ...

How an Australian’s FOI request busted open a UK science scandal

/ by / 0 Comment
The 2011 PACE trial examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care, but refused to share their data. West Australian Alem Matthees filed a UK Freedom of Information Act. The ruling released the data and further examination found glaring problems with the study ...

pwME to NIH: People with ME are Being Murdered by Neglect

/ by / 16 Comments
An American with ME had strong words for the National Institute of Health (NIH): You have stolen 40 years of my life. Johanna Kaiser gave a brave testimony about the neglect of people with ME during the February 1, 2017 phone meeting with the NIH in which institute leaders answered questions about ...

ME Activist Basics: Bird-Dogging and YOU!

/ by / 5 Comments
Bird-dog: (verb) search out or pursue with dogged determination. Contact with elected officials at town hall meetings cannot be overvalued. Handfuls of bird-doggers attend meetings around the country and change the course of history everyday.  Never heard of bird-dogging?  Bird-dogging is a strategy used by activists who seek out elected officials, ...

US: Family testifies about CDC’s harmful recommendations at CFSAC

/ by / 5 Comments
A member of the Shaw family reads their testimony during the comment period at the January CFSAC meeting: Good afternoon. I have had untreated ME/CFS for 38 years. Our testimony today is on the topic of the Center for Diseases Control’s (CDC) CFS group. The 2015 National Academy of Medicine report ...
GBD-Compare

Epic Measures: How One Man Changed the World (and Possibly ME/CFS and FM As Well)

/ by / 0 Comment
Chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) have a long, long way to go before they get the attention and resources they deserve. It would take a heroic leap to quickly achieve what people with these diseases deserve and what the diseases themselves - given their economic costs / burdens ...
Menu