3rd dose at 2 pm. (Day 1) 4 more days to go.
I, as a very Severe ME patient, can not do this without your help.
Please alert everyone, send this to your friends and share, and if possible, please consider d0nating. gofundme.com/f/save-nevra
#SevereME #pwme #pain #food
‼️Germany allocates 500 million Euros to research on #MECFS #LongCovid #PAIS from 2026-2036‼️
“We are opening a new chapter in researching these diseases.”
"The National Decade Against Post-Infectious Diseases is coming."
- German Federal Research Minister Dorothee Bär
@dorobaer.bsky.social
Germany has committed to a landmark National Decade for Post-Infectious Disease, investing €500 million over ten years to accelerate ME/CFS and Long Covid research.
🪩 Excellent news from Germany.
€50 million a yr available from 2026-36.
Germany pledges €500 million for research through the “National Decade Against Post-Infectious Diseases” (2026-2036), including #MECFS and #LongCOVID.
Addressing what they call “one of the greatest public health challenges of the 21st century.”
www.zeit.de/politik/deut...
Donald Trump and Elon Musk pushed out thousands of experienced, dedicated Social Security staff.
Now, the Social Security Administration is in crisis — and Americans can't access their hard earned benefits.
A Cornell University researcher has been developing an artificial heart for children for more than 20 years. Now, his research is on hold and his lab is shut down.
Update on Medicare Operations: Telehealth, Claims Processing, and Medicare Administrative Contractors Status During the Shutdown When certain legislative payment provisions (“extenders”) are scheduled to expire, CMS directs all Medicare Administrative Contractors (MACs) to implement a temporary claims hold. This standard practice is typically up to 10 business days and ensures that Medicare payments are accurate and consistent with statutory requirements. The hold prevents the need for reprocessing large volumes of claims should Congress act after the statutory expiration date and should have a minimal impact on providers due to the 14-day payment floor. Providers may continue to submit claims during this period, but payment will not be released until the hold is lifted. Absent Congressional action, beginning October 1, 2025, many of the statutory limitations that were in place for Medicare telehealth services prior to the COVID-19 Public Health Emergency will take effect again for services that are not behavioral and mental health services. These include prohibition of many services provided to beneficiaries in their homes and outside of rural areas and hospice recertifications that require a face-to-face encounter. In some cases, these restrictions can impact requirements for meeting continued eligibility for other Medicare benefits. In the absence of Congressional action, practitioners who choose to perform telehealth services that are not payable by Medicare on or after October 1, 2025, may want to evaluate providing beneficiaries with an Advance Beneficiary Notice of Noncoverage. Practitioners should monitor Congressional action and may choose to hold claims associated with telehealth services that are not payable by Medicare in the absence of Congressional action. Additionally, Medicare would not be able to pay some kinds of practitioners for telehealth services. For further information: https://www.cms.gov/medicare/coverage/telehealth.
🔥🔥CMS UPDATE ON TELEHEALTH FOR MEDICARE DURING SHUTDOWN🔥🔥
BEGINNING: 10/1/2025, MANY of the statutory limitations that were in place for Medicare TELEHEALTH services prior to the COVID-19 Public Health Emergency will take effect AGAIN for services that are NOT behavioral and mental health services.
New Lancet Study: 2x Risk of Long COVID After Reinfection
Risks of other serious outcomes also rise sharply.
This is not a “mild” illness when it rewrites a child’s future. We need research, medical care, and school protections that match the scale of the problem.
#LongCOVID
Ebola has a sixty-something percent mortality rate and costs a great deal to treat just one patient.
With vaccination this low and treatment this expensive, this is a human rights disaster in the making.
This is a problem only money can solve right now.
This is extremely bad. In the past, the Congo would have leaned heavily on USAID. That's no longer possible.
"...Just 1,740 people in three health zones of Kasai province have been vaccinated as of Sept. 21. The Bulape zone alone has a population of more than 212,000."
If you're getting ready for SCOTUS season, you need to add this webinar to your calendar! 9/30 discussion with experts about the Roberts Court www.americanprogress.org/events/twent...
From Nevra's Instagram drafts:
Young heart for love
Not heartache
Dark hair for catching the wind
Not to veil the sight of a cold world
Please keep sharing!
We are looking at VERY Severe #pwME now going back to #DV or homelessness
💙gofundme.com/f/save-nevra
#VerySevereME
FACT: When the 1st Trump administration cut the budget for ACA Open Enrollment information by 90%, Jimmy Kimmel used his platform to make sure that everyone on the marketplace in America knew that you needed to sign up or change your marketplace plan. That speaks for itself. Miss you, Jimmy Kimmel.🙏
I’m not an epidemiologist, but a cognitive scientist & biomedical researcher (PhD, Education) with expertise in digital health, health literacy, and behavior change. Not a credential drop—just context to establish perspective & credibility.
100% You got 20 out of 20 questions correct (weighted score: 26.6/26.6). *mask face emoji* EPIDEMIOLOGIST'S NIGHTMARE Perfect score! You're so well-informed, conspiracy theorists actively avoid you at parties.
Try taking the COVID competency exam yourself, and share it around! Great way to bust myths (and the person who wrote it is an epidemiologist, and well-informed, so it really does).
seanmullen.com/covidcompete...
96% - thanks for the reminder to brush up on our knowledge!
Ayrshire Post and Troon Herald, Scotland, 12th September 1986. Thirty-nine years ago today.
"Exercise should never be undertaken where M.E. is suspected as this worsens all symptoms". #myalgicencephalomyelitis
Review September 11, 2025
A Perspective on the Role of Metformin in Treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID
David FinebergAlain MoreauElena K. Schneider-Futschik*Christopher W. Armstrong
#ME/CFS #Metformin
Turns out that "Ableism is greater in the medical profession than in wider society," as "a lack of disability and neurodiversity awareness, coupled with discrimination & stigma, can significantly impact disabled doctors' lives and careers." New research:
www.healthcare-management.uk/medical-prof...
UW Medicine: 'Long COVID has impact on Latino communities'
'Researchers found nearly half of Latino patients surveyed reported chronic symptoms, with women and middle-age people most affected'
'“We need more research. Clearly, we need better treatment'
newsroom.uw.edu/video-librar...
The Role of Neuroinflammation in Post-Exertional Malaise Among Chronic Multisymptom Illness — Ninneman "PET imaging consisted of a 70 minute dynamic scan with a third generation translocator protein radiotracer – 11C-ER176." "Neuroinflammation was significantly higher in CMI" "No specific brain regions were differentially impacted by exercise in either CMI nor CON"
From the US:
The Role of Neuroinflammation in Post-Exertional Malaise Among Chronic Multisymptom Illness
asset.library.wisc.edu/1711.dl/MPB4...
Screenshot from latest Science for ME weekly update
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
After the Royal Free outbreak in 1955, medicine should have changed greatly, learning what complex chronic illness can do to people following viruses but it never learned its lesson.
@rfh1955.bsky.social
These numbers are horrifying. And this makes me wonder how bad it has to get before we do something about this.
“Outside the US, a systematic review of long COVID’s impact on the National Health System out of the UK found that 18% of healthcare workers were out of work due to the condition. “
Like so many of RFK Jr's claims, this is so breathtakingly, provably false that your brain short-circuits trying to counter.
Fields with enormous progress in the past 40 years:
The Human Genome Project
AIDS/HIV treatments
mRNA vaccines
MRI & other imaging tech
Minimally-invasive surgeries
Alt text in comments. #CDC
WelcoME to my PEMTalk where I try to walk you through the basics of #PEM, first and foremost, that it is not equal to fatigue.
#ME/CFS #PEM #pwME #PEM≠fatigue
Harvard LIFT (OMF Life Improvement Trial) showing pyridostigmine with and without LDN groups, along with placebo
LIFT Trial - here's the preprint for the trial www.researchsquare.com/article/rs-5...
Circulatory Dysfunction in ME/CFS and Long COVID Invasive CPET Preload failure Impaired systemic O2 extraction LIFT
Systrom is now up:
"Everything we have found in ME we have found in Long COVID, so we may slip up and use them interchangeably."
⚠️The authors also used a test for muscle weakness (Besinger score). It turned out that ME/CFS had such poor scores that the test wasn't useful in differentiating ME/CFS from myasthenia gravis.
Pyridostigmine improves hand grip strength in patients with #ME/CFS www.frontiersin.org/journals/neu...
If a lot of this was unfamiliar, I don't blame you!
@erinmarilee.bsky.social and I created an Anki flashcard deck for med students on IACCs that covers a many of these diseases, including ME/CFS, Long COVID, hEDS, MCAS, SFN, POTS/dysautonomia, and so on. Last link here:
www.cdc.gov/me-cfs/hcp/t...
