Preserving Access to Disappearing Information and Research

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. (That purge is covered in The Sick Times, in this article shared elsewhere on our forums by Yann04.

The Long COVID resources are far from being the only information recently purged. Court orders to restore information may or may not be honored, or perhaps only temporarily. Web pages that were deleted wholly or in part may come back heavily edited.

Our Concern
We all know the frustration of finding that a study we referred to in past is now behind a paywall. Example: For a few years after its 2006 publication, I was able to access this article on dental treatment in POTS, read it myself, and share it with dentists and with fellow patients who had dental procedures planned. Now it's behind a paywall. But at least it still exists and can be retrieved by anyone with JADA access.

The complete purge of studies, reviews, and information for medical professionals and patients from government websites is different. When those links are gone, they're gone.

So what can we do if we have any posts or blogs that link to government web pages? Those links can become useless. If there are pages we regular refer to ourselves, or send our health care providers to, those sites may become unavailable.

What We Can Do
We can create backups. Please contribute to this thread with links to any backups that are available to others, with any resources that help others archive and share information, and of course with any questions, or alerts about newly disappeared or changed resources.

We don't all have the skills or knowledge to identify information that might need archiving, or to archive it, so please, those who can, do. And share with our community. Thank you!

A Starting Place
This Substack article has helpful tips and links. There are resources on how and where to access the information even if it has been removed from government websites. Also, how to archive the information so it's more available to others. The authors have promised to keep this updated.
https://open.substack.com/pub/contr...es-are-going?utm_campaign=post&utm_medium=web

Ongoing
Please let me know if there are additional resources that I should add to this post, if they would become difficult to find later in the thread. All suggestions welcome. I've got limited energy and lots of fog, but I can at least kick this off.

Thanks!
Thank you all for being here, sharing resources, as our community has had to do throughout decades of neglect. Lack of useful information is sadly nothing new to us, but we have fought hard for studies to be conducted at all, and if we can help it, I know that we will not let the resulting data and its applications for our health just disappear.

Gratefully,
Creek

 

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 of cases, ER visits, trends. Also info on research. There are podcasts and brief updates on their youtube channel. They include information on Long COVID as well as measles, flu, and other diseases of concern.

https://www.youtube.com/watch?v=LQnKgk1oaT8

Mark Graham, Director of The Wayback Machine at The Internet Archive, gave an interview and talked about the pages that have been preserved there when they disappeared from the government websites.
brief interview:
extended interview:

One very important resource for our members, which Graham mentions in the interview:
"We archive academic papers at scale. We have a service called scholar.archive.org, and you can search for papers by their DOI, digital object identifier, by their title, etc."
A search on that scholar archive site for Myalgic Encephalomyelitis turns up over 3500 hits of papers that might be hard to find elsewhere.

Let's keep information available to one another; thanks!

 

Apparently the PubMed database was down for a while yesterday? It appears to be back up today.

I saw a post on Mastodon today which might be helpful:

source = https://fosstodon.org/@bert_hubert/114098204549587820

I don't think Europe PMC is an exact replica of PubMed but I'm not sure.

I'd appreciate any additional info or fact checking from folks who know!

A related article from MedPage Today talking about what might happen to PubMed:

https://www.medpagetoday.com/opinion/second-opinions/114383

 

I want to stress yet again that I don't know much about PubMed but I did find this interesting blog post from Hilda Bastian (from Feb. 14):

What if We Can’t Rely on PubMed?

 

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 information, so it's good to have backups.

 

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/

 

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!