@NIH_Innovates#MECFS is the most underfunded condition at the NIH. It is only funded 1% of YLD's said a recent US study.
#MECFS needs a fully funded large scale biomarker program and a clinical trials network.
Right now The Open Medicine Foundation is doing the NIH's job.
Hey @WIRED, how about interviewing neuroscientists who are actually studying the brains of people with #LongCovid? I'm available, and so are many others in the field.
"When the brain gets stuck in a feedback loop of fight or flight" What does that even mean? #Pseudoscience
The fun part about being this sick is that you very quickly disabuse yourself of the notion that certain groups of people who are considered very smart by the rest of society are indeed very smart by default - doctors, researchers, journalists, college professors, etc. etc.
@themjdworldwide Yes!
It's been a long time coming But both Upper Air UV and AutoUV are now Health Canada PMRA authorized
We can start building them into our hospitals
And long-term care
And schools
And public places
👏👏👏
After years of severe ME/CFS, I was lucky enough to spend the last few weeks being "mildly" affected.
Compared to severe ME, mild ME feels almost like a dream.
Compared to the healthy body I had before ME/CFS, it is still deeply disabling and devastating.
Millions of Americans live with infection-associated chronic conditions and illnesses, including long COVID, ME/CFS, and Lyme disease–associated chronic symptoms; conditions that are often debilitating, misunderstood, and under-recognized.
In a new Clinical Infectious Diseases viewpoint, CAPT Iskander and Dr. Haridopolos of the Office of the U.S. Surgeon General call for making these “invisible illnesses” visible through patient-centered care, stronger surveillance, multidisciplinary management, and continued research investment.
The article emphasizes the importance of validating patients’ lived experiences while advancing evidence-informed care to improve outcomes for people living with these complex chronic conditions.
Ensitrelvir succeeded where Paxlovid had failed to show efficacy, in post exposure prophylaxis. It’s also been known for years that it prevents severe late disease in those already symptomatic as well as Paxlovid.
Ensitrelvir should have been approved long ago. If it were from an American rather than Japanese pharma, it would have been.
There are no recognised subtypes within ME
Inclusion criteria based on aabs is probably the only one that makes sense right now and that is still tenuous
Danke an @MECFSResearch@C_Scheibenbogen und alle Beteiligten für diese unfassbar wichtige Konferenz.
Als Betroffener ist es natürlich extrem ernüchternd zu sehen wie weit der Weg noch ist, aber es geht voran.
#MECFS#LongCovid
Some med professionals on here are very irritating . Yes I understand the r0 likely being low and risk of h2h transmission increasingly significantly being low. “Low” is not a low enough risk when it comes to half of humanity. Risk needs to be zero. Quarantine those ppl.
Prof. Carmen Scheibenbogen eröffnete die International ME/CFS Conference 2026 mit einem Appell an die anwesenden Forschenden von #MECFS.
#MECFSConf2026
@kirstler31 Pre-LC, I had ADHD restlessness. No restlessness during LC. No issues with foods or other meds.
This just made it difficult to rest when I needed to.
Before Abilify, I was housebound.
At 4mg, I was able to walk 0.2 miles to a bench near my house, rest, and walk back.
At 6mg, I was able to walk 0.5 miles, rest, and then back.
But the restlessness was too much, even at 5mg, so I have gone back down to 4.
#LongCovid#MECFS
I am now at 4mg of Abilify per day (up from 2 in Feb), and I am continuing to see benefits in energy and overall well-being.
I will up it to 6mg in a few weeks.
#LongCovid#MECFS
@seanstidston Google says it can possibly make clotting worse. As always, talk to a doctor.
I believe it works mostly on brain inflammation, which I have always believed to be the underlying issue for me.