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#MEAction meets with Senate staffers
This week #MEAction, in collaboration with Solve ME/CFS and USAWG, conducted advocacy efforts with members of Congress to make
James Coyne Stormont talk on YouTube: PACE "outrageously bad"
Professor James Coyne’s February 9 Belfast talk, “The Scandal of the £5m PACE Trial”, is now available on YouTube.
Australia: Ask the medical research council to fund studies
Australia: Write to the National Health and Medical Research Council about funding research and updating criteria.
Announcement: May 18th Protest in Washington DC has now been rescheduled for May 25th!
#MEAction is excited to announce its first protest in Washington DC! Now rescheduled for May 25, 2016! Please join
24 organisations in 14 countries tell QMUL: release PACE data
All 13 organisations in the European ME Alliance (EMEA) have answered ME/CFS patient Clark Ellis’s call to request Queen
Art contest for young people with ME/CFS
The Pediatric and Adolescent ME/CFS Primer team is aiming to complete the new Primer by mid-October, 2016. As was done for the adult ME/CFS Primer, the team would appreciate having original artwork for the cover of the Pediatric and Adolescent ME/CFS Primer
Australia: Write to the Health Minister
Want to write to the Health Minister but need a hand? Here’s a handy guide to creating your own letter.
Now’s the time to write, before the election!
New Bill Would Up NIH/FDA Funding For Neglected Diseases
Last Thursday, Elizabeth Warren (D-MA) and Patty Murray (D-WA) introduced an important new bill which seeks to increase funding
NIH aiming to commit RFA funds to ME/CFS research
Update: NIH confirms RFAs will happen On March 30 NIH revised it’s response to the CFSAC recommendations and made
NIH: Solving ME/CFS will need “an army of really good researchers working together”
At the NIH tele-briefing on Tuesday, March 8th, Dr Walter Koroshetz, Director of NINDS set out the NIH’s strategy
CureME research news email service launches
Swedish ME patient Kasper Ezelius has announced the launch of an email service called CureME that will allow subscribers
NIH Telebriefing Full Transcript + Audio
On Tuesday, March 8th, NIH held a one hour tele-briefing to answer the community’s questions about their plans for
Unity in activism: on abusive attacks within the ME community
“Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passion, they
#MEAction delivers Lancet PACE petition, makes Wall Street Journal
#MEAction delivers Lancet PACE petition, makes Wall Street Journal #MEAction has sent an 11,000-signature petition to The Lancet, calling
March 10th Sacramento screening of Forgotten Plague
Forgotten Plague, the new documentary about ME/CFS is screening at Reading Cinemas The Tower Theatre in Sacramento, CA at 6:30pm on March 10th, 2016.
ME lectures by Mella and others available on DVD
In November 2015, six lectures on ME were held in Stavanger, Norway. The event was filmed and made into a DVD which is now available for an international audience with English subtitles for the Norwegian lectures.
Participate in the Tuesday March 8th NIH telebriefing
On Tuesday, March 8th at 10am ET, the NIH is holding a one hour tele-briefing to answer the community’s questions about
Ten organisations call for PACE data release, AYME refuses
Ten organisations so far have joined ME/CFS patient Clark Ellis’s call to Queen Mary University of London (QMUL) to
NIH to drop functional movement disorder control group from study
NIH is dropping the functional movement disorder (FMD) control group from their intramural study, according to an email Simon McGrath received from Vicky Whittemore.
#MEAction's Questions for NIH's Intramural Study Team
The US National Institutes of Health (NIH) is hosting a telebriefing on Tuesday to “share information about [their] upcoming activities and to
#MEAction Co-founder taking Leave of Absence
Our co-founder, Beth, is taking an indefinite leave-of-absence to focus on her health. She is very grateful for all
Extraordinary NIH ME/CFS study may be most comprehensive and in-depth ever
Update (Sunday March 6, 1630 GMT): NIH drops FMD control group I’d asked Dr Vicky Whittemore is she had
Griffith Uni claims breakthrough on diagnostic blood test
Australian scientists say they are close to marketing a diagnostic test for Chronic Fatigue Syndrome.
*NEW TIME * Australia: See Forgotten Plague Film in Canberra
UPDATED: Canberra screenings of film ‘Forgotten Plague’ on Friday 1 April at 6pm or Monday 4 April at 1pm.
NINDS to consider recommendations submitted by ME/CFS advocates
Recommendations submitted by advocates to NINDS to proactively contribute to a strong federal research program and to encourage collaboration between NIH and our community.
Vote: USAWG requests to NINDS director
The US Action Working Group (USAWG) is submitting a letter to NINDS director Walter Koroshetz detailing a list of requests relating
Last week at NIH: Feb 28 Update
Last Week at NIH with a focus on the post-infectious ME/CFS intramural study – You can watch an introduction
Wheelchair users in Bolivia suspended from bridge in protest
A small group of wheelchair users suspended themselves from a bridge in Bolivia to protest treatment of disabled people
Australia shouldn't fund 'totally inappropriate' CBT and GET
‘Chronic fatigue syndrome chronically underfunded’, Australian community radio current affairs program.
NIH patient participation and communication: what do you want to see?
How should patients be integrated into the NIH process? The US National Institutes of Health has made several promising, public
Solve ME/CFS discusses Walitt, patient participation with NIH
Solve ME/CFS had a conversation with Vicky Whittemore of the US National Institutes of Health today regarding some pressing issues,
Progress In ME/CFS Patient Advocacy: Overcoming The Militant Meme & Why We Must Keep Evolving
What is the role of outrage in activism? “Anger is justified but, anger can be used against you. Anger can be misplaced or anger can be the flame that fuels the kind of passion that brings about great change.”
NIH's initial response to article and comments on Walitt
Over the weekend we wrote to NIH to share our article about Brian Walitt, along with comments from the
Bad timing, Collins says of NIH response to CFSAC
On Feb. 8, I wrote to NIH Director Francis Collins to express concern over the NIH’s mostly negative responses to the
Open letter to Francis Collins, director of NIH, concerning myalgic encephalomyelitis
Open letter to Francis Collins, director of NIH, concerning myalgic encephalomyelitis Dear Francis Collins: The following happened since I
NIH gives $246,000 for study of oral rehydration in ME/CFS patients with orthostatic intolerance
The US National Institutes of Health (NIH) has announced a $246,000 grant to study the use of an oral
NIH lead clinical investigator thinks CFS and fibro are somatoform
Brian Walitt is the lead clinical investigator for the NIH’s new intramural ME/CFS study. His appointment has raised serious
Jennie Spotila Reports on NIH ME/CFS Spending in 2015
Jennie Spotila Reports on NIH ME/CFS Spending in 2015 Jennie Spotila has written another detailed analysis on NIH spending on
Dr Nath on ACT UP and patient involvement in ME/CFS research
At Tuesday’s CDC Grand Rounds Wilhelmina Jenkins, a long-time ME/CFS advocate, asked Dr. Avindra Nath, the PI of the
Transcripts and Slides from Dr Nath's talk on NIH study
Update: The video of Dr Nath’s talk is now available on youtube. Dr Avindra Nath, Chief of the Section of Infections
The power and pitfalls of omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath’s two-part blog. Here’s
PACE Trial’s Forbidden Fruits: The Fruit of Your Labour
A look at what you achieved by asking charities to call on the anonymized PACE trial data to be released, and what this means going forward.
NINDS Director emails about NIH enrollment criteria today
NINDS Director confirms PEM and CCC required for NIH post-infectious ME/CFS study.
Sign this petition: tell Irish Minister for Health to make Ampligen available
There are thousands of people with M.E. (Myalgic Encephalomyelitis) in Ireland. At the very best, we receive only symptom
CDC Grand Rounds on ME/CFS Tuesday
ME/CFS is going to be the topic for CDC’s monthly Grand Rounds this Tuesday at 1 pm ET. The title
The Unpredictability Factor
Running on the idea that visual representations of life with M.E. can – as accurately as possible – portray the depth, the range, the severity and the unpredictability of the condition, I am pleased to say that I am currently embarking on Change For M.E. Change For Us’ next visual project….
Submit your questions to the NIH
We invite everyone in this community to take a look at these questions and add your suggestions for additional
USAWG submits questions to the NIH
Over the weekend, members of the US Action Working Group (USAWG) were alerted to the publication of the National
Big donations speeding up Big Data Study
The Open Medicine Foundation’s Big Data study on severely ill patients can, and is, speeding up thanks to big donations.
Australian Health Department pins its hopes on NIH research
Australian senator asks medical research council about ‘remarkably small amount of funding since 2000’ and are they funding GET or CBT .
36 more scientists join open letter to Lancet on PACE
An international group of 36 scientists and clinicians have added their names to an open letter that was sent
Positive Answers to Initial Questions re NIH Clinical Center Protocol
Editor’s note: This is a clarification on the NIH’s earlier, accidental release of the intramural study protocol, which listed
NIH's intramural study protocol raises many questions
Recently, the US National Institutes of Health (NIH) announced its protocol for a new intramural study examining post-infectious fatigue.