mea

Posts moved from the News from the UK MEA thread. Links to the UK UK MEA material - What you need to know about ME/CFS Booklet Video - Youtube (The MEA appears too have now made this a private video)

I have just sent the following personal letter to the Trustees of the UK ME Association. Or at least to some of them. I had 2 email addresses and guessed the rest - at least 2 have bounced back. __________________ To the trustees of the ME Association, re concerns about the MEA trusteeship...

https://meassociation.org.uk/2024/08/vumedi-dr-shepherd-talks-about-the-overlaps-between-long-covid-and-me-cfs-in-a-video-aimed-at-healthcare-professionals/ VuMedi (where the video features) describes the platform as “a video education platform for doctors. Over 450,000 doctors use VuMedi to...

https://www.elaros.com/ ELAROS is a private company that works with the NHS to provide digital apps and websites, including patient apps where they can fill in PROMs, and access to these by clinicians. The initial aim, I think is for it to be used particularly for Long Covid clinics to track...

https://meassociation.org.uk/2024/06/me-association-professor-manoj-sivan-to-develop-new-protocol-for-dysautonomia-in-me-cfs-and-long- sorry Dont know how to copy the text

Wasn't sure where to put this but I wanted to note the following: It's not known whether or when the ME Association plans to update its Articles of Association to reflect a change in its objectives...

Moved posts In light of recent discussions on 'pacing' and 'energy management', here https://www.s4me.info/threads/bias-misleading-information-and-lack-of-respect-for-alternative-views-have-distorted-perceptions-of-myalgic-encephalomyelitis-cfs-2017-goudsmit.32906/#post-470664 I've had a look...

Split from the 2021-2 thread From today’s Politico newsletter: Shadow Work and Pensions Secretary Jonathan Ashworth will deliver a speech to the Center for Social Justice think tank this morning, pledging reforms to out-of-work support. The Labour plans involve allowing people on sickness...

Abstract Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is characterized by persistent physical and mental fatigue. The post-COVID-19 condition patients refer physical fatigue and cognitive impairment sequelae. Given the similarity between both conditions, could it be...

ME Association The ME Association Clinical & Research Guide 2022: Children & Adolescents - available as a free download ME/CFS has been reported in children as young as five, and there appears to be a peak of onset around 13 to 15 years of age. This 6-page chapter has been taken from the 2022...

Post copied from this thread: EDS, hypermobility, and the link, if any, to ME/CFS I didn't know where to post this, but the ME Association had an online survey about common health conditions in pwME. The current result: Which of the following conditions, which are more common, or appear to be...

Available at http://amzn.eu/d/gkyHiz0

From Twitter Eta couldn't post on NICE guidelines threads as they are closed

2021 Appointment of Professor Leslie Findley to be patron of the MEA - starts in this post, notice of his withdrawal here 2024 AGM, company documents, trustees, historic governance issues discussion starts here ********* This post copied and many subsequent posts moved from United Kingdom: ME...

"The ME Association is the only M.E. charity involved in the collection of post mortem tissue samples from people diagnosed with the disease in the UK. Our long-term aim is to establish a national ME/CFS Post Mortem Tissue Bank where greater numbers of samples can be collected and stored for...

https://meassociation.org.uk/2021/06/guest-blog-the-shame/

"The ME Association decided to issue this position statement on exercise and activity management in ME/CFS (and Long Covid) in light of recent discussions which have appeared on, for example, BBC Newsnight, and in the Guardian newspaper and that are continuing online. .... Graded Exercise...

Copied from this thread The British ME Association are requesting people to send them accounts of their experiences of health and social care as part of a planned campaign looking at good practice and the new NICE guidelines to roll out in ME Awareness Week in May and beyond. See...

https://meassociation.org.uk/2020/09/the-me-association-we-are-seeking-a-research-correspondent-to-join-our-team/

The ME Association has just published it's latest guide. https://meassociation.org.uk/2020/08/now-available-the-2020-me-association-me-cfs-pvfs-clinical-and-research-guide/