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Donate Your Brain to Find a Cure for ME/CFS
One of the best ways to advance research toward finding answers about neurologic disorders is through post-mortem brain donation
"Unrest" premieres in Copenhagen to major media coverage
There is one more screening of Unrest at the CPH:DOX film festival on March 24th, and then Unrest heads to
Congress delays vote on American Health Care plan – Act now
Please note: #MEAction welcomes submissions from all contributors regarding issues that affect the health care of people living with Myalgic
Julie Rehmeyer: Hope and Despair in Through the Shadowlands
Recently, #MEAction sat down with Julie Rehmeyer to discuss her new book Through the Shadowlands, her op-ed in the
The Cut
Are you prepared for an 18% reduction in ME spending?
I’m not. For one thing, the first year of funding for the new Collaborative Research Centers is set aside in this year’s budget. But all bets are off going forward. Like many other RFAs, the one for ME Centers explicitly states, “Future year amounts will depend on annual appropriations.” So it is possible that future years of funding could be cut or eliminated.
Coming Out of the Closet
Obviously, I still have not integrated the sick person I am with my self-concept. In my heart, I aspire to be an adventurer. In my brain, I am a popcorn popper of plans and temptations. In reality, I can do one activity and, on a good day, maybe two, but not day-after-day in a row. On a bad day I have to be still. I have to wait for the temporary reprieve that recovery mode will eventually bring.
Calcium channel ion defects: research from Australia’s Griffith Uni.
Researchers from Queensland’s Griffith University recently identified a dysfunctional cell receptor in the immune system of people with Chronic Fatigue Syndrome (CFS).
Fifteen people meeting the Fukuda criteria for CFS were studied, against 25 controls. Considering the small size of the study, the results cannot be considered definitive.
Europe gears up for its third #MillionsMissing Day of Action
Europe is gearing up for its third #MillionsMissing Day of Action set for May 12th, which is the international
Video: How to protect American healthcare
Housing Works is mobilizing people who want to fight for health care. Housing Works provided this webinar last month on how to protect and improve healthcare in the U.S. using a tactic called “bird-dogging.”
Free Webinar with Dr. Peter Rowe, director of Chronic Fatigue Clinic
Solve ME/CFS Initiative (SMCI)‘s first webinar of the year, “A Clinical Approach to ME/CFS in Adolescents and Young Adults,”
SF Bay Area: Get Stanford Some Healthy Controls!
If you live in the San Francisco Bay Area, or know any others who do, please consider asking them
NIH funding: What will this mean for ME/CFS research at Columbia's CII?
If the Center for Infection and Immunity (CII) team is successful with its RFA application proposal, this funding would clearly help the institution to become a Collaborative Research Center, and would help to fund the analysis work involved in the Monster study – albeit slowly. If you’ve missed it, this study is not only about microbes and viruses; it was hugely expanded to include immunology, metabolomics, proteomics, genetics and epigentics.
Join the webinar tomorrow: 6 Ways to Maximize Your Congressional Impact.
Join SolveCFS for their first advocacy webinar on “6 ways to maximize your congressional impact.” Thurs., March 2, 10-11
Letter to NIH: End the Insult
A person with ME for more than 38 years wrote this pointed letter to the National Institute of Health, calling its leaders to act with urgency and correct their gross neglect of people suffering with ME.
Australia: government refuses to stop funding trial focused on GET/CBT
An Australian university is trialling a program to train health professionals in administering graded exercise therapy and cognitive behavioural therapy to roll it out nationally and internationally, despite the evidence of harm. Here is the response to a petition to ask them to stop.
How an Australian’s FOI request busted open a UK science scandal
The 2011 PACE trial examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care, but refused to share their data.
West Australian Alem Matthees filed a UK Freedom of Information Act. The ruling released the data and further examination found glaring problems with the study.
Thank Senator Markey for promising to help ME patients
On Thursday, Feb. 23, I attended a packed town hall meeting in Northampton, Massachusetts with my U.S. senator, Ed
South Africa: Investigative news channel features ME & #MillionsMissing
The South African investigative journalism program Carte Blanche has aired a well-researched segment featuring the struggle of the ME
Living with a Spouse who has ME/CFS – webinar series
The Bateman Horne Center is honored to host a free, two-part discussion panel program: “Living with a Spouse Who has ME/CFS and Fibromyalgia.” Part 1 will feature husbands whose wives are ill and part 2 will feature wives whose husbands are ill in an open discussion about an often difficult subject.
Australian ME/CFS doctor awarded Order of Australia Medal
Well respected Australian doctor, Richard Schloeffel, was amongst those to receive an Order of Australia Medal (OAM) in this year’s Australia Day honours list, for his service to medicine in the field of chronic and infectious disease.
Stanford team announces update on ME/CFS research
A research team at Stanford gave an update yesterday on some of the breakthroughs its team has made in understanding
Is SIRS, CARS, MARS – and now PICS – causing the "CHAOS" in ME/CFS?
Could ME/CFS be the post SIRS ‘immune paralysis’ state of CARS (Compensatory Anti-Inflammatory Response Syndrome)? Or MARS (mixed antagonists response syndrome)?
Host a dinner to fundraise for ME/CFS researchers
“Dining for Dollars” is a fund raising idea from the AIDS era and we hope to spread the idea by posting the results of our own dinner held this past weekend.
U.S.
U.S.: Join us for a training on bird-dogging with Paul Davis, National Advocacy Coordinator for Housing Works on Sunday,
Canada uses “bird-dogging tactics” to force meeting with health minister
Toronto: #MillionsMissing activists attended their federal health minister’s “meet-and-greet” on Jan. 14th to ask the health minister to respond
Congress is home & hosting public meetings
U.S. House and Senate members are home in their districts for the month of February. Many will be holding public
pwME to NIH: People with ME are Being Murdered by Neglect
An American with ME had strong words for the National Institute of Health (NIH): You have stolen 40 years
NIH answers questions about research centers for ME
Want to know more about the research centers and data center being planned for ME/CFS by the National Institute
ME Activist Basics: Bird-Dogging and YOU!
Bird-dog: (verb) search out or pursue with dogged determination. Contact with elected officials at town hall meetings cannot be
Drastic changes to Ampligen clinical trial hurts ME patients – sign the petition to fight it
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.
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