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Thank you, Wiggle! Having ME-related reading disabilities, I'm so grateful for a synopsis I could skim to find the exact info I came looking for. On seeing this news, I wondered, did they mention ME? And there we are in Item 6. Does this item 6 mean that new connections with all these diseases...

As members of the subset of ME patients with sudden viral onset, many of us could benefit from research that focuses on postviral ME and Long COVID. I do wonder about this research being "pre-publication" for a couple of months now, and not being peer reviewed.

This article explains how cuts are particularly harmful to people with disabilities. https://therevolvingdoorproject.org/doge-ssa-cuts/

Re: a post I posted before, sorry, I don't recall exactly how I put it, and it's gone now, but it was regarding endangerment of our disability benefits. So here's the corroboration my previous post lacked...

This just in: National Cancer Institute Employees Can’t Publish Information on These Topics Without Special Approval The list of topics includes "but is not limited to" the highly specific like, "peanut allergies;" the far-reaching like, "environmental justice;" and the utter catchall, "topics...

... Only time will tell if my daughter's disability payment or my pay for being her caregiver will be paid as normal, delayed, reduced, or lost entirely. Of course the stress exacerbates symptoms of M.E.. At a medical appointment I was telling the practitioner I've had increased pain and sleep...

So ridiculous. It's like their removal of photos of the Enola Gay because it contained the word "gay." This is not even being done by thinking people. They have AI combing the websites for banned words. Or maybe the combing is being done by those nasty transgenic mice. Anyway, the chilling...

It was hard enough for people with ME to get disability benefits before the firings began. Now? "However, processing new claims — whether it be for retirement or disability benefits — may take longer since those cannot be processed without Social Security employees, Hornick said."...

Came here to share the list of forbidden words, and I see we've already been discussing it. Yep, "accessibility" is at the top of the list. The Associated Press is suing over another freedom of speech attack. The idea of our press or our government employees being penalized for using common and...

Thank you. I remember when friends in the UK were going through upheavals with the NHS and ATOS and huge worries loomed. It's good to know our countries aren't completely isolated, and though systems change and threaten us, we have places like this forum, where there are friends who really "get it."

Oh that is a good resource too! Spoonwise, I have only a tiny tarnished teaspoon for reading large blocks of text, but I skimmed and saw that there are lots of suggestions for alternate ways of finding information, in this blog post. Thanks again!

This was shared on bluesky yesterday by an epidemiologist: a group of volunteers have created an archival site of CDC information, here: https://restoredcdc.org/www.cdc.gov/

Thanks so much for the info and alternative resource! I did glimpse a mention of PubMed being down but by the time I saw it, it seemed to be back up. But also I've heard that some pages in some places that have gone down and flickered back on have gone away again, or returned with altered...

My daughter and I, both with severe ME, may lose health care, all our income, and housing due to threats to disability benefits, retirement funds I paid into all my life, and medical programs that provide health care for millions of US citizens, senior and disabled included. I do not think that...

One impact of the 2024* change in US government on ME/cfs and Long COVID is that resources on medicine and science are disappearing. Workarounds are being created and I started a thread for sharing resources here...

Okay, this thread was moved here and hasn't received any notice so I do hope folks will contribute anything they can, as our online government health resources continue to disappear. Some new resources have emerged. The American Medical Association informs us on disease outbreaks with numbers...

This thread is intended to provide resources to preserve and share research and science information that might be suppressed. What is Happening The recent purge of USA government information on Long COVID resources is just one example of health care information and research being deleted...

Thank you for sharing this. I'm glad to see that another court order against the barrage of anti-science executive orders. So far, reports are that the Trump administration is not complying with the court order against his freezing of grants and funding, but at least court orders are a start...

What's the best, easiest strategy for keeping info on ME/cfs available? Keeping in mind that we are people with limited energy, bodies full of pain, and brains full of fog, what's easy for us to do, that will keep it as easy as possible for us to access, information that we need? Published...

I came to post about how to respond as a community to the disappearing info problem. I think this is something that needs its own thread: a planning and action thread for archiving and sharing data and articles that are important to us. See my reply later in this thread. This is a way we can...