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US: Family testifies about CDC's harmful recommendations at CFSAC
A member of the Shaw family reads their testimony during the comment period at the January CFSAC meeting: Good
US: Read Terri Wilder's CFSAC Testimony
The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS)
Help spread the Bristol Cable article about #stopGET
On Tuesday 24th January a Bristol Cable article from the #stopGET team about children with ME, FITNET, MAGENTA and patient opposition to GET/CBT will go online.
Funding for U.S. research centers falls way short
Government funding for research centers and a data management center for ME/CFS has been made public, and the amount
Epic Measures: How One Man Changed the World (and Possibly ME/CFS and FM As Well)
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 they impose – should receive. So much needs to be done (funding, doctor education, drugs, other treatments) – and we’re coming from such a low place – that it seems almost impossible that it can be done in a reasonable amount of time. In fact, people do the impossible – make what seems at first to be inconceivable differences in one area or another – all the time. This blog is about a man who did that, and did so in a way that may directly help those with chronic fatigue syndrome (ME/CFS) and fibromyalgia.
US: Read Lily Chu's CFSAC Testimony
Thank you for this opportunity to address the CFS Advisory Committee. I am writing to in response to the
ME/CFS Advocacy Down Under in 2016
2016 was a big year for ME/CFS advocacy. As we turn over the page to the fresh new year, the #MEAction Network Australia group reflects on some of the highlights of its advocacy efforts in 2016.
Winners of the #MillionsMissing Art competition
We’re excited to announce the winners of the #MillionsMissing Art competition. 1st prize went to CJ Janzen from Cambridge,
Dimmock, Mirin & Jason: Estimating disease-burden in the US
Yesterday, Mary Dimmock, Arthur Mirin and Leonard Jason published a hallmark study in disease burden in myalgic encephalomyelitis. Why
Dr. Nahle’s Webinar Provides Overview of Current Research
The Solve ME/CFS Initiative (SMCI) hosted a webinar December 15 in which Zaher Nahle, PhD, MPA, summarized research in
Three Schools of Alternative Medicine Teach about ME
Note: This is the final part of our series on education in ME/CFS. To start reading at the first
Register your comment for the upcoming CFSAC meeting!
The CFS Advisory Committee want to hear from YOU!
Fluge, Mella, and Armstrong: more support for disordered metabolism in ME patients
One of the frequent complaints of patients, researchers, and policymakers about ME research is that the findings are scattered,
Update: the ongoing work of #MillionsMissing
Momentum continues from the #MillionsMissing campaign that was born last May. Activists took to the streets worldwide in
CALLING ALL ACTIVISTS: Tell Dr. Francis Collins— Don’t Miss Your Deadline! Release the ME FOAs now!
The NIH announced that it would fund ME research by publishing two Funding Opportunity Announcements (FOA) by Dec. 2016,
#MillionsMissing Holland gets the ear of the Minister of Health
#MillionsMissing Holland has made its voice heard in the House of Representatives. House of Representatives member Linda Voortman
Canada: Find CIHR qualified grant reviewers!
When a grant proposal is submitted, a panel of experts will examine it for merit before making a final
#MEAction Network UK: FITNET letter published in Positive Health Online
#MEAction Network UK’s statement denouncing CBT as a form of treatment for ME has been published in the January
The PACE trial: Where “recovery” doesn’t mean getting your health back
Do people really recover as a result of CBT and graded exercise? Sadly not, says a new analysis of
Recent Tryptase Study Yields Potential ME/CFS Insight
From the Solve ME/CFS Initiative: We recently highlighted a paper published online on October 17, 2016 (doi: 10.1038/ng.3696) the journal Nature Genetics, one of the most rigorous publications in the field of genetics with tantalizing findings. The paper, titled “Elevated basal serum tryptase identifies a multisystem disorder associated with increased TPSAB1 copy number,” had two key features that could be potentially relevant to ME/CFS:
Dr VanElzakker: two new ME/CFS studies at Harvard
#MEAction recently interviewed Dr. Michael VanElzakker regarding two, new studies on ME/CFS. The first aims to discover evidence of
21st Century Cures Act Passes House with Overwhelming Bipartisan Support
21st Century Cures Act Passes House with Overwhelming Bipartisan Support ME/CFS advocates have been eagerly awaiting passage of the 21st Century Cures Act since it was initially introduced in 2013, given it was originally written to increase NIH funding and fast-track research and treatment development. On Wednesday, November 30, a compromise bill with modified provisions from the original 21st Century Cures Act swept the House… READ MORE
Carol Head Named 2017 Oprah Magazine Health Hero
Carol Head has just been honored by O, Oprah Winfrey’s magazine, as one of fourteen 2017 Health Heroes, “visionaries
New study on CFS/ME in adolescents in Spain: We come in PACE
This is the “new” studie some doctors are trying to move around Spain with the recomendations of using CBT and GET in patients of CFS at the age range of 12-17.
#SockItToMECFS with BHC's new fundraising challenge!
Bateman Horne Center launches the #SockItToMECFS Challenge. Wear your wildest and wackiest socks to raise awareness and funds for advancing ME/CFS diagnosis and care. Challenge your friends to do the same.
Ramsay Award Winners and Webinar with Dr. Zaher Nahle
Do you have questions about ME/CFS research? Two weeks from today, the last webinar of this year will be held on December 15th with Zaher Nahle, PhD, MPA, vice president for research and scientific programs at Solve ME/CFS Initiative. Send your questions about upcoming research programs to [email protected] To sign up for the webinar visit: https://attendee.gotowebinar.com/register/2743000415077341956
Donate to Karina's Legal Fund
Over the past several years, many of us with and without ME have looked on in horror as Karina
Australian university must not ignore evidence-based science
Australia’s UNSW is trialling an education module treating chronic fatigue syndrome patients with graded exercise therapy and cognitive behaviour therapy (GET/CBT), despite the evidence showing these therapies have no benefit and may cause permanent harm. Sign the petition!
Join the #MillionsMissing Art Competition Part-Two
We’re excited to announce the #MillionsMissing Art Competition, open to all art forms, with submissions due by Jan. 6,
#MillionMissing Activists Meet with HHS for Follow-Up
As reported in the August 5 update on the meeting between HHS and advocates for ME on August 1,
Jen Brea's 'Unrest' to Debut at Sundance Film Festival
After years of work and hundreds of hours of footage, Jen Brea’s documentary, now entitled Unrest, is ready for
#MEAction US protest demands
These demands were originally issued for the May 25, 2016 MillionsMissing demonstrations. Minor revisions were made to the demands
Take Lenny Jason's survey on emotional impact of having ME
Lenny Jason‘s recent research paper, Mortality in patients with ME and CFS, found patients are significantly at risk for
Thoughts on NIH speakers from Dr. Zaher Nahle
It was truly unsettling to learn about the news of an invited speaker lecturing at the National Institutes of Health (NIH) on November 9, 2016. For decades, the speaker has been a staunch adversary of studying the pathophysiology of ME/CFS and refuses to acknowledge its root cause. I have written many times previously, including in an editorial in March of this year, on the aftermath of the revitalization of the Trans-NIH ME/CFS Working Group—specifically on the perils caused by what I then called “ME/CFS deniers” and “psychosomatization sympathizers.” We will not dedicate additional time to these individuals or elaborate on their misguided theories on our pages other than to make the following three points…
ME activist calls on NIH to "get back to science" at Shorter Talk
M.E. denier, Edward Shorter, called CFS the modern version of hysteria in a presentation chronicling the history of 19th
Dr. Komaroff’s Webinar Provides Hypothesis, Hot Research and Hope
Dr. Komaroff’s Webinar Provides His Hypothesis, Hot Research and Hope Link to webinar: https://youtu.be/ENrdrGj0p-c by Darla N. In a webinar
Update on Shorter's Presentation at NIH
We have some quick updates on the planned NIH talk by Dr. Edward Shorter, a well-known ME denier and
Shorter invited to NIH to share perspective of disease denialism
On Thursday, November 3, Dr. Maureen Hanson shared a screenshot revealing a planned talk on November 9th at the
#MEAction Denounces Use of CBT in Treatment for Chronic Fatigue Syndrome
FOR IMMEDIATE RELEASE: Wednesday, November 2, 2016 CONTACT: L.A. Cooper |[email protected] and [email protected] #MEAction Denounces Use of CBT
Watch the Bateman Horne Center Meeting Livestream
Lucinda Bateman, MD, BHC Founder and Medical Director, is engaged in thought leadership discussions on ME/CFS and FM across the globe, traveling to several conferences in Oct. At this meeting she will will recap the information, insights, progress and promise.
New Research Project Launches through SMCI’s Targeted Initiative Research Program
SMCI recently launched a new partnership as a component of our targeted initiative program, within our Pathways and Biomarkers Discovery Track. The project consists of original research in the areas of bioenergetics, metabolomics, and lipidomics using high-throughput technology. Importantly, this new SMCI research project relies on blood from well-qualified patients from The Levine Clinic; it also builds on recent discoveries in gut microbiome from Dr. Maureen Hanson’s lab, which uses these same patients.
Cast your vote today help fund epigenetic research for ME
Action CIND is competing in the Aviva contest for $100,000 to advance ME and FM research in Canada. REGISTER at http://avivacommunityfund.org, CAST 18 VOTES TODAY at https://avivacommunityfund.org/voting/project/view/16-356, and SHARE contest information to help them.
#MEAction Network UK's polling results for the proposed MEGA study
Last week, we asked for your thoughts on the proposed MEGA study. The poll ran for 5 days and
The NIH Will Issue Two New RFAs for ME Research
It has been nearly five years since the National Institutes of Health (NIH) last released a funding opportunity for Myalgic Encephalomyelitis (ME) research.
#MillionsMissing Crafts Competition
#MillionsMissing Crafts Competition We want to have fun while we work for equal treatment for ME sufferers! Win prizes! Submit photos and pattern of a crochet – or knitting project with the #MillionMissing logo. ( Also with a picture of the finished product). We pick three winners receiving a prize and they will be the designers behind #Millionsmissingnorway ‘s official patterns.
Tell the NIH about your experience of PEM
Dr. Mark VanNess and Staci Stevens recently visited the National Institutes of Health (NIH) to present their findings on
Madness
We ask for attention and compassion with energy we don’t have. Often this is misunderstood.
Director Collins responds to 55 Congressional Representatives' Letter of Concern
Recently, #MEAction in conjunction with other advocacy organizations and many individual advocates have also successfully lobbied Congressional members to
No more 'should': the aim to stop punishing myself for having ME
Have you ever noticed how so many of us beat ourselves up for having this chronic illness, almost as if it is invisible even to us, even as we feel the pain and exhaustion? While we feel the need to not give up and keep a hold of all we can of our lives, I’m becoming aware that I for one often get this fight tangled up with a lot of damaging self-judgement.
#MillionsMissing Holland protest against social exclusion
Worldwide protest of patients with ME against social exclusion After being ignored for years and being excluded from participation
Increasing Efficacy of the CDC’s ME/CFS Educational Program
INTRODUCTION The Centers for Disease Control (CDC) is revising and creating new educational materials for its Myalgic Encephalomyelitis/Chronic Fatigue
Fiscal Year 2016 Request for Applications Tally
Despite advocates’ expectations, Fiscal Year 2016 ended with no RFAs issued for ME research.
SPEECHES FROM THE FRONT LINES OF #MILLIONSMISSING: TASHA & ZARA
FROM THE FRONT LINES OF #MILLIONSMISSING ROUND 2: SPEECHES BY TASHA AND HER DAUGHTER ZARA (AT NYC PROTEST)