website

Following discussion on this thread I have now sent the following personal letter to Sonya Chowdhury, Chief Executive of the UK charity Action for ME about their current web page of advice about Graded exercise therapy. I will post any response I get on this thread.

Our social media post... :) We really would welcome any feedback at any time! n.b. The website might look a little familiar with those that visited the 20000Missing.nz site that was used around May 2019 Awareness week in NZ (and set up by two parents of young adults with ME based in...

This company appears to be selling a test which it describes as Chronic Fatigue Tests Tired All The Time Chronic Fatigue Test Kits Regular price £15.99 the problem is the link to the test comes after they explain that far from making it clear that ME/CFS is not the same as chronic...

I have created a website on severe ME: “A Life Hidden is dedicated to those shut away from the world because of the intense suffering of ME (myalgic encephalomyelitis). This site is a collection of my advocacy work, and I hope that it will serve as a resource for anyone wishing to understand...

This wasn't too bad until they started trying to explain the symptoms: " If you have CFS, you may have: Sore throat Fatigue Memory or concentration loss (which may come from a lack of true rest) Headaches Unrefreshing or lack of productive sleep (you get plenty of sleep but you're still...

https://www.meaction.net/2018/10/11/meaction-sends-recommendations-to-cdc-for-me-website/ Direct link to PDF with recommendations - http://www.meaction.net/wp-content/uploads/2018/10/Recommended-Changes-to-the-CDC-Webpages-on-ME-2.pdf

Thought it might be useful to have a thread on this for reference. I found this site which sells disability aids. It has a large section on CFS and links to MEA a couple of times but AfME more. In addition to the usual mis-information on CBT for pwME/CFS and GET, it says " The Lightning Process...

Text from their Facebook post Treatment and management page - https://www.actionforme.org.uk/living-with-me/treatment-and-management/ GET and CBT page - https://www.actionforme.org.uk/resources/questions-and-answers/what-are-get-and-cbt/ I'm sure many of us here will find the wording...

BACME's (British Association for CFS/ME) website has been down for ages, I'd thought, but now it's up again, and it's quite strange. Here it is: https://www.bacme.info/ The first weirdness is its huge, colourful main-page banner of lively, fully able people and mostly children jumping and...

For those who aren't on the email list, the Solve ME/CFS Initiative group has updated their website. Here's the announcement from their mailing list: I only looked at it briefly but at first glance it looks better.

https://www.nrshealthcare.co.uk/articles/condition/chronic-fatigue-syndrome

University of Bristol has created a website with the documents from the SMILE trial. http://www.bristol.ac.uk/ccah/resea...bility/chronic-fatigue/smile/smile-documents/ Note that does not include the data, of course.