love how we killed the old, frail anti-nuke ayatollah just to have him replaced with his young, healthy son who wants nukes and who just had his father, mother, wife, and child murdered on the same day by his mortal enemy. surely this will bring peace to the region
61 years ago today at the foot of the Edmund Pettus Bridge, Selma, Alabama.
The Diagnostic Challenge of Chronic Fatigue Syndrome
www.latimes.com/doctors-scie...
Screenshot from AMMES March 2026 Newsletter
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
And by later - not years later. I'm hoping to work out how to find people interested in covering costs for others.. I used to run InformationIsPower in northern Alabama: www.hudsonalpha.org/information-... and this is how it was set up. Would very much like to do something similar for ME/CFS.
If you would interested in learning more about what we are trying to do; happy to answer questions. lworthey@uab.edu. Hope to really help people.
If you would interested in learning more about what we are trying to do; happy to answer questions. lworthey@uab.edu. Hope - at least for what we do - to really help people now.
I agree - this is a huge need. Hoping to try to work this out on a later phase of the project! If you would interested in learning more about what we are trying to do; happy to answer questions. lworthey@uab.edu. Hope - at least for what we do - not to leave anyone behind :(
This is amazing.
www.getyourfuckingmoneyback.com
Does anyone (maybe @longcovidadvoc.com @longcovidsupport.bsky.social @longhaulerspodcast.bsky.social @mecfsskeptic.bsky.social) know if genomic data is being generated for the #LongCOVID #Recover study? I thought it was, but have been told a few times that it is not currently being generated. Ta!
It will be awful.
Read this thread and article. RFK Jr. is a eugenicist pushing experiments on vulnerable black populations.
The fact that is it quakers-town is not lost on me. A central tenet of Quakerism is the commitment to peace, which has in the past compelled Quakers to protest against war, militarism, and violence.
Let's hope that Prince Andrew - sorry Andrew Mountbatten -Windsor - is a big enough fish that they can't murder him in custody like the others..
And he might be someone that they couldn't murder... Maybe.
👀 👀
Here's a visual representation of how many times Trump's name appears in the Epstein files... so far.
www.instagram.com/p/DUgiBD_EiSP
If anyone is around HSV/BHAM USA & interested in helping stand up a data driven precision medicine #ME/CFS #LongCOVID clinic; please drop a line.. I am certain that there are things that can be done to help if we can get the right team together.. Not easy, but doable. Help is needed. Please share.
Do we know their reasoning?
100% agree. This is exactly what precision medicine was supposed to be :(.
51% Long Covid is ME.
Research the Canadian Consensus Criteria for best diagnostic tools available for #ME @sabrinapoirier.bsky.social is also a great resource 🙏🏻 as is @sunsopeningband.bsky.social 🙏🏻🙏🏻 particularly on understanding how #PEM Trump's everything in symptom management.
Sanders: The American people do not want this country to be an authoritarian society or an oligarchy. We have our differences, that’s what democracy is about—we argue it out. We don’t throw people who disagree in jail. We don’t intimidate the media. We don’t send ICE agents to shoot people.
We are all kind of waiting for RFK to actually, finally pick up an easily preventable disease and then die in agony of it while he tries to use it as justification for an array of snake oils.
Everyone like "it's tuberculosis, just take antibiotics!" and he's like "no, urine inhalation therapy"
Dr. Jarred Younger explains E. A. Worthey’s lab latest eye opening research paper: A precision approach to understanding #ME/CFS
Uncovering the genetic architecture of ME/CFS: a precision approach reveals impact of rare monogenic variation
link.springer.com/article/10.1...
@lizworthey.bsky.social
No prob. It really got me thinking about the meaning of rest. In general and to me.. So thanks for this!
6) Link to the study:
Birch et al. Uncovering the genetic architecture of ME/ CFS: a precision approach reveals impact of rare monogenic variation.
link.springer.com/ar...
Discussion on S4ME:
www.s4me.info/thread...
OK I did both. There were tow different versions. So I filled it twice; hope that was correct. It was very helpful for me to think about "rest" in this way. Had not done that before... Really good questions!
Happy to lend brain power/thoughts. How best to do that?
To be clear, I know RECOVER includes many deeply committed researchers, clinicians, and patients. My concern isn’t the people but the process and timeline. When there is so much to do and people in need of answers, holding tightly to embargoes feels like a missed opportunity for collective progress.
Patients (including me) enrolled to advance knowledge. Honoring that commitment means enabling discovery at scale, responsibly and securely of course; that is critical, but now. I hoped for a more inclusive approach. It’s not too late to get there, but will take opening the doors wider a bit faster.
Progress in complex disease comes from many teams asking different questions, applying different models or the same types of models differently, and challenging assumptions. Can we not try to expedite this process by working out a new way of doing this not one after the other, but concurrently?
I know very well as a researcher that this is “how research usually works.” But Long COVID is not usual. The scale of the global impact is enormous, the heterogeneity and complexity is real; finding the answers will require a village.
