Creek
Established Member (Voting Rights)
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
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
