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2007 guideline could previously be found at https://www.nice.org.uk/guidance/cg53 - there are no details there and it just points to the 2021 guideline. Archives of the 2007 webpage can be found at https://web.archive.org/web/20240000000000*/https://www.nice.org.uk/guidance/cg53. To see the...

Genetics Centre of Excellence Webinar On 24 October, from 2 to 3 pm, Action for ME are hosting a webinar about the recent activities of the Genetics Centre of Excellence. The event will feature: An update from Sonya Chowdhury (Action for ME) on the Centre’s main activities since its launch...

Published papers thread for w/c 30th Sept. Twitter: Facebook: https://www.facebook.com/sci4me/posts/pfbid0349bizcUwhyBsm7p8WhaJYzKvcCt8ZUYjYsyNGnP5wCw45m2w9onfGqA5rBQPtnbRl Mastodon: https://med-mastodon.com/@s4me/113265165504628431 Bluesky...

Abstract Functional somatic disorder (FSD) is a prevalent disorder that can be severely disabling for the patient and is associated with major health costs. There are few formalized care programs for these disorders in the country, and their management encounters various difficulties, both in...

News in Brief posts for w/c 30th Sept. Twitter: Facebook: https://www.facebook.com/sci4me/posts/pfbid03VGX8gjGsgcP65uu7y6e6x1dwMiKBBo7XinyvLpuAS3Y187UQviRkWmzVuEbidQjl Mastodon: https://med-mastodon.com/@s4me/113259683702043757 Bluesky...

Deutsche Gesellschaft für ME/CFS have published an open letter. Below is an automatic translation of their Facebook post describing it. "Open letter to cashier medical associations demands adequate care for ME/CFS patients in accordance with the G-BA's long-COVID policy The in-patient...

Of course, there is a difference between the forum being officially involved and a number of people being involved who happen to be forum members.

Now at 11,757 signatures. Petition main page, https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

"Hospital Episode Statistics data is routinely collected by the NHS in England together with patient age, gender and ethnicity. This data, downloaded from the Feasibility Self-Service of NHS DigiTrials, was used to stratify individuals with the ICD-10 code that best reflects ME/CFS symptoms...

"The lifetime prevalence of ME/CFS for English females and males may be as high as 0.92% and 0.25%, respectively, or approximately 390,000 UK individuals overall. This improved estimate of ME/CFS prevalence allows more accurate assessment of the socioeconomic and disease burden imposed by...

For those who don't want to click through to any social media, what does it say?

For those not on Twitter what does this say?

Social media posts, please help by sharing if you can. Twitter: Facebook: https://www.facebook.com/sci4me/posts/pfbid03gqkDxkpMy7s27fYYCAv3WqTqhuXUmMrqGQHhNPa9XkrCWtqwUD6QYds4mkeuEVVl Mastodon: https://med-mastodon.com/@s4me/113231870472319140 Bluesky...

Link to update above on petition site, https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review/u/32931560 Now at 11,418 signatures. Petition main page, https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

Abstract This paper introduces a metric capable of tracking a hypothetical brainstem “switching” mechanism involved in regulating the afferent influence of blood pressure on the vagal efferent control of heart rate. In theory, this metric could be applied to evaluate the “efficiency” of...

"In all participants, the diagnosis of ME/CFS had been made originally by an appropriate professional (ME/CFS service); additionally, a clinically trained member of the research team (B.R.G.) confirmed the presence of the symptoms at the time of the study according to the Center for Disease...

Yeah, the links don't work in the original article on the part that I quote above, I've removed the non-working links in my original post here to avoid confusion.

"On June 19, 2024, the Multiple Sclerosis Community Advisory Board (MS CAB) met with the EBV-MS project research team for a pivotal consultation. The objective of this meeting was to ensure meaningful engagement and involvement of expert patients in the ongoing EBV-MS clinical trials...

Published papers thread for w/c 23rd Sept. Twitter: Facebook: https://www.facebook.com/sci4me/posts/pfbid02egcr8HimmXrhgUk6PXF9gQ3yDE4jUcoT9LK26jF5gxeUPLRXopicVbKjpo6Jke4nl Bluesky: https://bsky.app/profile/scienceforme.bsky.social/post/3l5ed3mrmbt2b Mastodon...

That is when the project and funding ends, our aim is to publish results before then.