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There is one more screening of Unrest at the CPH:DOX film festival on March 24th, and then Unrest heads to
Please note: #MEAction welcomes submissions from all contributors regarding issues that affect the health care of people living with Myalgic
Recently, #MEAction sat down with Julie Rehmeyer to discuss her new book Through the Shadowlands, her op-ed in the
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.
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.
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 is gearing up for its third #MillionsMissing Day of Action set for May 12th, which is the international
Solve ME/CFS Initiative (SMCI)‘s first webinar of the year, “A Clinical Approach to ME/CFS in Adolescents and Young Adults,”
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 SolveCFS for their first advocacy webinar on “6 ways to maximize your congressional impact.” Thurs., March 2, 10-11
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.
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.
On Thursday, Feb. 23, I attended a packed town hall meeting in Northampton, Massachusetts with my U.S. senator, Ed
The South African investigative journalism program Carte Blanche has aired a well-researched segment featuring the struggle of the ME
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.
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.
Could ME/CFS be the post SIRS ‘immune paralysis’ state of CARS (Compensatory Anti-Inflammatory Response Syndrome)? Or MARS (mixed antagonists response syndrome)?
Toronto: #MillionsMissing activists attended their federal health minister’s “meet-and-greet” on Jan. 14th to ask the health minister to respond
An American with ME had strong words for the National Institute of Health (NIH): You have stolen 40 years
Want to know more about the research centers and data center being planned for ME/CFS by the National Institute
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.