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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

#MEAction February 22, 2016

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

#MEAction February 21, 2016

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

#MEAction February 21, 2016

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

#MEAction February 20, 2016

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

#MEAction February 18, 2016

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

#MEAction February 17, 2016

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

#MEAction February 16, 2016

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

#MEAction February 16, 2016

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.

#MEAction February 16, 2016

NINDS Director emails about NIH enrollment criteria today

NINDS Director confirms PEM and CCC required for NIH post-infectious ME/CFS study.

Courtney Alexander Miller February 16, 2016

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

#MEAction February 15, 2016

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

#MEAction February 14, 2016

free patient conference call

chat live with other pwme globally

#MEAction February 14, 2016

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….

#MEAction February 14, 2016

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

#MEAction February 12, 2016

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

#MEAction February 12, 2016

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.

Sasha Nimmo February 12, 2016

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 .

Sasha Nimmo February 12, 2016

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

#MEAction February 11, 2016

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

Courtney Alexander Miller February 9, 2016

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.

#MEAction February 8, 2016

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

Beth M February 7, 2016

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.”

#MEAction February 7, 2016

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

#MEAction February 7, 2016

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

#MEAction February 4, 2016

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

#MEAction February 4, 2016

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

#MEAction February 2, 2016

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

#MEAction February 1, 2016

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

#MEAction February 1, 2016

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.

#MEAction February 1, 2016

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.

#MEAction January 28, 2016

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.

#MEAction January 25, 2016

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’

#MEAction January 22, 2016

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.

#MEAction January 21, 2016

UK study refuses to release data: PACE trial

Large controversial UK study still refusing to release data: latest update on the PACE trial

Sasha Nimmo January 21, 2016

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

#MEAction January 20, 2016

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.

Sasha Nimmo January 20, 2016

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

#MEAction January 19, 2016

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.

#MEAction January 19, 2016

Lancet Psychiatry publish Coyne and Laws PACE critique

Lancet Psychiatry have published three letters criticising a paper published in the journal on the long-term follow-up results of

#MEAction January 19, 2016

Everest Challenge for ME Research UK

A team of climbers are taking part in a gruelling charity event with the aim of scaling the height of Everest (8,848m) in a single day, raising funds for much-needed research into ME/CFS. As the climbing wall is only 12.5m in height, the team will have to climb it over 708 times to reach their goal and it’s expected to take them between 6 and 9 hours. The Everest Challenge will be a real test of the team’s commitment, strength and endurance.

#MEAction January 9, 2016