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Patients in the Ampligen clinical trial are asking for community help to protest changes that will force many to stop getting this medicine. Please sign our petition urging Hemispherx to put ME patients first, always.
A member of the Shaw family reads their testimony during the comment period at the January CFSAC meeting: Good
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.
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.
Yesterday, Mary Dimmock, Arthur Mirin and Leonard Jason published a hallmark study in disease burden in myalgic encephalomyelitis. Why
The Solve ME/CFS Initiative (SMCI) hosted a webinar December 15 in which Zaher Nahle, PhD, MPA, summarized research in
Note: This is the final part of our series on education in ME/CFS. To start reading at the first
The CFS Advisory Committee want to hear from YOU!
One of the frequent complaints of patients, researchers, and policymakers about ME research is that the findings are scattered,
The NIH announced that it would fund ME research by publishing two Funding Opportunity Announcements (FOA) by Dec. 2016,
#MillionsMissing Holland has made its voice heard in the House of Representatives. House of Representatives member Linda Voortman
#MEAction Network UK’s statement denouncing CBT as a form of treatment for ME has been published in the January
Do people really recover as a result of CBT and graded exercise? Sadly not, says a new analysis of
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:
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
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.
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.
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
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!
We’re excited to announce the #MillionsMissing Art Competition, open to all art forms, with submissions due by Jan. 6,
As reported in the August 5 update on the meeting between HHS and advocates for ME on August 1,
After years of work and hundreds of hours of footage, Jen Brea’s documentary, now entitled Unrest, is ready for
Lenny Jason‘s recent research paper, Mortality in patients with ME and CFS, found patients are significantly at risk for
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…
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 His Hypothesis, Hot Research and Hope Link to webinar: https://youtu.be/ENrdrGj0p-c by Darla N. In a webinar
On Thursday, November 3, Dr. Maureen Hanson shared a screenshot revealing a planned talk on November 9th at the
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.
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.
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.
Last week, we asked for your thoughts on the proposed MEGA study. The poll ran for 5 days and
#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.
Recently, #MEAction in conjunction with other advocacy organizations and many individual advocates have also successfully lobbied Congressional members to
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.
Worldwide protest of patients with ME against social exclusion After being ignored for years and being excluded from participation
INTRODUCTION The Centers for Disease Control (CDC) is revising and creating new educational materials for its Myalgic Encephalomyelitis/Chronic Fatigue