Read the Latest in ME News and Campaigns
Never miss a beat! Subscribe to our newsletter and select “Daily Digest” to get a summary of the day’s news & actions delivered to your inbox.
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.
Case Study: "Brain Fog" in CFS can be seen in qEEG/Loreta
Marcie Zinn, Mark Zinn, and Leonard Jason of DePaul University published a case study this week that details how qEEGs can
PACE: Objections, Challenges & Beliefs
I am writing this piece to offer Dorothy Bishop & Stephan Lewandowsky some patient perspective on their joint piece in Nature : “Research integrity: Don’t let transparency damage science”. Specifically, I would like to add some context to this line in particular:- “When people object to science because it challenges their beliefs or jeopardizes their interests, they are rarely committed to informed debate.”
James Coyne at Belfast Castle: PACE a “wasteful train wreck of a study”
Professor James Coyne told a packed audience at Belfast Castle in Northern Ireland on Sunday that the PACE trial
Tuller summarizes issues with PACE in Health Affairs
David Tuller has published a new article in the Health Affairs blog that summarizes the issues with the conduct
Response to AHRQ's continued support of PACE
On February 3, 2016, a group of patient organizations and advocates (including #MEAction) sent a followup letter to the
Geocentrism and PACE – both on the wrong side of science
Geocentrism and PACE – both on the wrong side of science Thank you to Ella Peregrine for kindly allowing
Tuller: PACE authors “wrapping themselves in victimhood”
Journalist and public health expert Dr. David Tuller has, on Virology Blog, attacked a recent commentary in Nature that
Call on our ME/CFS charities to support patient calls for release of the PACE data
Tell our charities: QMUL must release PACE data I need your help. The UK Information Commissioner recently ruled that
We All Have CFS, Like It Or Not
I’ve been inspired to write by Lucibee’s recent blogpost about the PACE trial (https://lucibee.wordpress.com/2016/01/27/my-thoughts-about-the-pace-trial/), She raises an important point about how patients can sometimes be received for reporting any sort of improvement from CBT or GET.
NIH Grant Reviewers in 2015
Thank you to Jennifer Spotila for giving us permission to reprint her article and for all of her great investigative work.
Feds Fail First Test of the “New” Chronic Fatigue Syndrome (ME/CFS) Era
The DHHS response is disappointing. The NIH’s continuing reluctance to produce and RFA – the one thing we know will spark interest in ME/CFS – is nothing if not baffling. Francis Collins promises are, at least at this point, ringing hollow.
Solve ME/CFS Initiative Grades HHS on CFSAC Response
Solve ME/CFS Initiative Grades HHS on CFSAC Response The Solve ME/CFS Initiative has created a report card for HHS’
British climbers raise £3,500/$5,000 for ME Research UK
A team of determined British climbers have succeeded in climbing the height of Everest to raise thousands for biomedical ME research. Watch a time-lapse video of this positive & successful fundraising event.
UK study refuses to release data: PACE trial
Large controversial UK study still refusing to release data: latest update on the PACE trial
James Coyne to talk in Belfast on “scandal” of the PACE trial
Talk by James Coyne in February Professor James Coyne of the University of Pennsylvania will be giving a talk
Australian Health Dept answers questions on ME
Most of the $2.4 million in research the Australian government says is for CFS is spent on psychology, exercise or for other conditions such as hepatitis C. No studies funded in a decade.
QMUL reject PACE FOI request from Ron Davis and colleagues
Queen Mary University of London (QMUL), acting on behalf of the authors of the highly controversial PACE trial, has
10,000 signatures for more research funding in the UK!
Calling all British M.E. sufferers & allies, Inspired by our American friends and the progress that has been made over in the States with government funding and new research projects, we think it’s time for patients to put the pressure on the UK parliament. We are asking for an increase in budget to fund bio-medical research as well as the formation of a work group to represent the issues facing our community in government.