WABI 5 News (Maine): '‘Life-changing funding’: UMaine professor advocates for Chronic Fatigue research funding’ www.wabi.tv/video/2026/0...
‘Life-changing funding’: UMaine professor advocates for Chronic Fatigue research funding
WABI TV 5 News at 6
wabi.tv
Sympathetic 144-second video clip on Maine (US) local TV: ‘Life-changing funding’: UMaine professor advocates for Chronic Fatigue [Syndrome] research funding www.wabi.tv/video/2026/0... #MEcfs #CFS #PwME
Emily is really living through the depths of chronic illness, please help if you can.
Emily Johnson@emilyrj.bsky.social · 5d agoUpdated my GoFundMe, please share and comment, need more donations www.gofundme.com/f/help-emily... Highlights: may need more neurosurgery trips and surgeries due to vein issues, stage 3 gastroparesis aka gastric failure, stage dyssynergic defecation, more severe sleep data confirmed
Sick Of This BS I’m tired of all of it. I’m tired of being tired and I’m tired of having to use the word tired to describe something so much more profound. Watch for more 🔥🔥🔥💙 I’m never giving up though, I will have freedom!!! 😤💙 ——————————————— #mecfs #LongCovid #ChronicIllness #pwME #spoonie
Girl, same. When I used to be on Facebook, I had so many people private messaging me about their LC (I'm a therapist.) They were not posting about it publicly. Many of these people knew each other, yet they all swear they don't know anyone who has long COVID, and *they* have Anything But Long COVID.
babs ✨@itsbabs.bsky.social · 7mo agoif you think you’d don’t know anyone with longcovid, but you don’t use any mitigation yourself, consider: yes you do, they just may not feel safe enough to tell you.
Covid is still the third leading cause of death in canada, after heart disease and cancer. #CovidIsntOver #CleanTheAir #MedSky #IDSky #MaskUp
Erika Hall@erikahall.bsky.social · 3d agoIt continues to fuck me up that we stay thinking about 9/11 but want to memory hole Covid so bad we're destroying the entire concept of public health in the US.
![In the United States, there have been 103,436,829[3] confirmed cases of COVID-19 with 1,238,563[3] confirmed deaths, the most of any country, and the 17th highest per capita worldwide.[43] The COVID-19 pandemic ranks as the deadliest disaster in the country's history.[44] It was the third-leading cause of death in the U.S. in 2020, behind heart disease and cancer.[45] From 2019 to 2020, U.S. life expectancy dropped by three years for Hispanic and Latino Americans, 2.9 years for African Americans, and 1.2 years for White Americans.[46] In 2021, U.S. deaths due to COVID-19 rose,[47] and life expectancy fell.[48]](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:ty2kxmxjmtealqi2kc7f4pww/bafkreiej6o22cdapxm6lj3rgrrznhhijzm5kpcjmvscemg2g7vg4tzm7na)
One of the things a patient with complex chronic disease dreads to hear from any doc is, “Add this new thing to your routine. It will only take 5 minutes each day.” The “only” is doing *such* heavy lifting. When you add in all the other bits and pieces, tracking medications, handling the 1/3
And it usually doesn’t really help either.
David Keegan@drdavidkeegan.bsky.social · 15h agoOne of the things a patient with complex chronic disease dreads to hear from any doc is, “Add this new thing to your routine. It will only take 5 minutes each day.” The “only” is doing *such* heavy lifting. When you add in all the other bits and pieces, tracking medications, handling the 1/3
Unbound is now available to watch on YouTube! www.youtube.com/watch?v=mxK6... #MECFS #LongCovid #NEISvoid #dance #DisabledArt
Unbound: Illness is not the end of dance
YouTube video by Unfixed Community
youtube.com
Lia Pas@liapas.bsky.social · 3w agoWhat if movement didn't have to be big to matter? Unbound is a film woven from 20 bodies, 20 stories, and 1 thread of connection. Join us for the premiere on July 29th at 6:30 PM ET. www.eventbrite.com/e/unbound-gl... A reflection on my process for this film on my blog: liapas.com/2026/07/11/u...
Results of following 44 #POTS patients for 20 yrs. Some improved, some worsened, some fluctuated. Only 1 person’s symptoms resolved. (Looking at you, medical myth that #POTS magically goes away over time.) Mention of common comorbidities #EDS #MECFS #MCAS onlinelibrary.wiley.com/doi/10.1111/...
onlinelibrary.wiley.com
1) We wrote a new article on cell and tissue analysis using genetic data. For ME/CFS, the results strongly point to neurons. One of the top hits is the medium spiny neuron, located in a region deep inside the brain called the striatum.
Cell and tissue enrichment in ME/CFS - ME/CFS Science
By matching DNA results with gene expression databases researchers can determine the tissues and cellContinue readingCell and tissue enrichment in ME/CFS
mecfsscience.org
For the @thesicktimes.org I wrote a primer on how to read trials critically. We go over what different types of trials can and can't tell us as well as the difference between a statistically significant and a meaningful result. thesicktimes.org/2026/07/21/h...
How to interpret clinical trial results for Long COVID - The Sick Times
With no proven treatments or cures, many people with Long COVID are turning to off-label medications, supplements, and medical devices to treat their symptoms. There are numerous options — and some of...
thesicktimes.org
Many multidisciplinary/rehabilitation studies for ME/CFS, Long Covid, etc. pretend to have meaningful positive results. Here's one that clearly states the intervention didn't work: virology.ws/2026/07/23/t...
Trial By Error: No Benefits for Multidisciplinary Rehabilitation in New ME/CFS Study | Virology Blog
By David Tuller, DrPH It is refreshing to read a study about a rehabilitative intervention for ME/CFS or Long Covid or so-called “medically unexplained symp ...
virology.ws
@rthm.bsky.social Dr. Putrino, Dr. Bateman, Dr. Curtin, & moderator Charlie McCone Webinar: how to best manage and treat PEM. Info on different types of PEM, how to navigate a crash, and interventions for reducing PEM. 8/6 2pm PST Sign up here: ow.ly/nAvg50ZtEb8
Welcome! You are invited to join a webinar: How To Manage and Treat Post-Exertional Malaise (PEM). After registering, you will receive a confirmation email about joining the webinar.
Join Dr. David Putrino, Dr. Lucinda Bateman, Dr. Jennifer Curtin, and moderator Charlie McCone for a discussion on how to best manage and treat post-exertional malaise (PEM). Learn about the different...
ow.ly
@batemanhornecenter.bsky.social Pediatric ME/CFS/LC Resources: Care Guide covers PEM, pacing, crash management, and school support. batemanhornecenter.org/wp-content/u... Webinar covers diagnosing and managing ME/CFS/LC in children. www.youtube.com/watch?v=no1a...
batemanhornecenter.org
📢 Participants needed for Long COVID research I'm helping an MSc student recruit adults living with Long COVID for an important study exploring experiences of rehabilitation and recovery. 🔗 app.onlinesurveys.jisc.ac.uk/s/lboro/long...
Factors Influencing Experiences of Rehabilitation Among Adults with Long COVID: An Explanatory Sequential Mixed-Methods Study - Online Surveys | Online surveys
Online surveys is a powerful, easy to use tool for creating online surveys. Run by Jisc, Online surveys is used by over 300 different organisations in the UK...
app.onlinesurveys.jisc.ac.uk
Your brain uses about 20% of your body's energy. A study found people with Long COVID had lower energy in a key brain region, helping explain brain fog and fatigue. Creatine may help cells deliver ATP energy, but like any supplement, it's probably not the answer on its own.
Long COVID Study Finds Major Energy Deficits in the Brain - Health Rising
A long COVID study examining, for the first time, energy levels in the brain, found them to be depleted in a large region called the cingulate cortex.
healthrising.org
Severe Covid leads to persistent viral reactivation, with >10 different viruses noted in the first 40 days after hospital admission. Long Covid was specifically associated with reactivation of latent Anelloviridae virus @nature.com www.nature.com/articles/s41...
Virus reactivation in acute and long COVID-19 - Nature
Chronic reactivation of distinct herpesviruses and anelloviruses occur during acute and long COVID-19, and track with disease severity, inflammation and outcomes, revealing immune signatures with prog...
nature.com
A severe bout of COVID-19 can wake up an army of dormant viruses hiding inside the body go.nature.com/4fDUY9w
COVID can wake up a slew of dormant viruses inside you
Reactivation of typically harmless anelloviruses, in particular, seems to be linked with developing long COVID, study finds.
go.nature.com
Call your Congressman and demand $50 million in NIH funding for #LongCOVID and #MEcfs research. notjustfatiguewebsite.cdn.prismic.io/notjustfatig...
![Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [ME/CFS] Research Roadmap.—The
Committee recognizes the urgent need to advance research for ME/CFS, particularly given
its overlap with long COVID and its relevance across multiple Institutes and Centers, and
commends NIH for approving the ME/CFS Research Roadmap and developing an
implementation plan in response to prior Committee direction. Building on this work, the
Committee provides no less than $50,000,000 within the Office of the Director to support
implementation of the ME/CFS Research Roadmap. These funds shall be used to support
new and expanded research activities consistent with the Roadmap’s recommendations,
including but not limited to biomarker discovery, development and validation of diagnostic
tools, and interventional and clinical trials across relevant Institutes and Centers.
The Committee directs NIH to implement the ME/CFS Research Roadmap’s
recommendations and to include in the fiscal year 2028 Congressional Justification a
discrete summary of ME/CFS-related research investments, including projects supported
with these dedicated funds; a description of how Roadmap implementation is being
coordinated across Institutes and Centers; and an explanation of how ME/CFS research
supported under the Roadmap complements and informs NIH’s research on Long COVID,
post-acute infection syndromes, and related autonomic and neuro-immune disorders.
Thank you for your leadership and consideration of this request. With dedicated FY27 support,
Congress can help ensure the ME/CFS Research Roadmap becomes a real vehicle for progress—not
just a plan on paper—and finally move this field toward the diagnostics, treatments, and answers
https://notjustfatiguewebsite.cdn.prismic.io/notjustfatiguewebsite/abJ_fVxvIZEnjmR3_ME-CFS-FY27-Appropriations-Letter-Research-Roadmap-Funding.pdf](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:szc7xq5qv7wg2abye6tlvet2/bafkreibmxaaky2m4py3v2er2434m5syee4hxcqx6elsjsyobgcxvlsqp5a)
Billy Hanlon@bhanlon15.bsky.social · yesterdayBangor Daily News: 'Congress has a plan to help people with chronic fatigue syndrome. It needs to fund it.' 'The NIH has a roadmap, the science is ready, and the plan is written. What is missing is the funding...' By Amy Blackstone www.bangordailynews.com/2026/08/04/o...
CNN: 'What we’ve learned about Covid-19 since the pandemic' 'Millions of people in the US are also living with long Covid, a chronic condition with wide-ranging symptoms – including fatigue, difficulty breathing, neurological and digestive issues..' edition.cnn.com/2026/08/04/h...
What we’ve learned about Covid-19 since the pandemic | CNN
Here’s what we’ve learned – and how our understanding has evolved – since the earliest cases of the novel coronavirus were first reported.
edition.cnn.com
ME/CFS affects ~9 million Americans. There are no FDA-approved treatments. We need medical research funding to change that. Today advocates are asking Congress to change that - join us! It takes 5 minutes: solvecfs.quorum.us/campaign/157943/ #MECFS #MEAwarenessHour
Tell Congress to Fund ME/CFS Research in FY27
9 million Americans live with ME/CFS — a serious, disabling disease with no FDA-approved treatments. I just contacted my representatives to urge them to increase CDC funding, keep ME/CFS as an eligibl...
solvecfs.quorum.us
Closing out Maryland's second day on the Hill, we were at the office of @alsobrooks.senate.gov meeting with staff And talking up the NIH ME/CFS Research Roadmap
~Q & A Capstone Episode~ Interview with Dr. Peter Rowe ~ premieres today ~ Monday, 6/29/2026 @1pmET tinyurl.com/RoweMECFSped... 6th and final episode of Evidence-Based Pediatric ME/CFS, an updated video guide for #pediatric #MECFS #RoweMECFSWebinars
Having the intramural study exist is what opens the door to future opportunities in other higher amount grants for ME/CFS. I have no idea what the future holds, but that was a benchmark we needed to hit.
I am doubtful that NIH will do another intramural study of ME/CFS. That was Dr. Collins’ baby. We have good extramural researchers out there who could implement the roadmap, if the funding could be allocated. And yes - PEM has to be at the heart of any studies going forward.
If you look at the amount of good work that went into creating the ME/CFS Roadmap, you get a very different picture from “effort preference” - a term that should die a rapid death.
Wallit wasn’t a high ranking person until he was put in charge of the NIH intramural study - a serious error on Dr Nath’s part. Collins asked Nath to do the study, and he passed much of it to Wallit. Those in charge of extramural funding are far more knowledgeable, although not perfect.
If you can, please send in your comments. This is important for all people living with disabilities! www.facebook.com/groups/20923...?
'RECOVER’s electronic health record study revealed early answers about COVID and Long COVID' 'The EHR study also employed an innovative study type called a target trial emulation (TTE)' recovercovid.org/news/recover...
RECOVER’s electronic health record study revealed early answers about COVID and Long COVID
RECOVER’s electronic health record study, which completed analyses in May, examined the health data of over 60 million people to advance Long COVID research.
recovercovid.org