information

Citizen Science and Scientific Communication: What, When, Where and How to inform and Who should communicate about Long COVID Jennifer García Carrizo, Manuel Gertrudix Introduction The lack of adequate health information, especially during crises such as COVID-19, creates distrust and...

https://www.actionforme.org.uk/uploads/pdfs/Explaining%20M.E.%20CFS.pdf

Copied post Online research launched to help those with Long Covid "A free comprehensive online tool has been released today to help those suffering from Long Covid. Chronic fatigue support group, ME Support, said people with Long Covid have been calling for more support and information for...

I've been seeing many lately and thought a thread could be useful. Either coming from Long Covid advocates or professionals interested in learning about ME, people sometimes send out open requests for information, papers or studies on a specific topic that may span many subjects. Usually those...

This post has been copied and following posts copied or moved from this thread: News from Australia I found this thought provoking - how do we get more understanding? The dilemma for medical professionals This programme highlighted for me the dilemma that medical professionals have. They need...

For people who have no idea what ME is like, (for example most doctors and healthcare workers) how would you express it briefly? You could use: words/phrases, maybe a word cloud. quotes or facts drawings/pictures The space is small and rectangular. All ideas and links are welcome. You do...

I am searching for a couple of sentences that describe what ME/CFS is, while giving some insight into how it affects the body and daily life. A couple of reasons for this search A powerful sentence (or two?) could be used by pwME and their supporters to more successfully educate those around...

http://www.wellatschool.org/chronic-fatigue-syndrome

Copied from this thread I haven't looked at the update myself yet https://www.actionforme.org.uk/resources/our-publications/booklets/ https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-ME-Jan-2020.pdf

The title pretty much says it all but I'll waffle a bit more. The idea is to provide a document that either provides those things that we have evidence for, either positive or negative, or those things that we don't in as brief a format as possible. The more our advocates can base their...

This post and the four following ones have been split from this thread: Action for M.E. hosts DWP spotlight training https://www.actionforme.org.uk/uploads/this-is-me-May-2018.pdf " Have you found this resource helpful? Is there a way we could improve it? We would love to hear your feedback...

This page is listed as being updated April 2018. Not sure what has been changed but there are some good points in it. https://www.health.ny.gov/diseases/conditions/me-cfs/