United Kingdom: Action for ME (AfME) news

“We are currently underrepresented by men, non-binary and black and minority ethnic people in our team and would particularly welcome applicants from these groups.”

 

Could you be persuaded to apply @adambeyoncelowe?

 

I'm just suddenly vaguely pondering it... I feel like I'm too young! 35 seems too young to be a trustee of anything!

 

go for it if you want to! trustees can be any age, i'm sure you'd be great

 

I'm a bit pressed for time, but I could certainly consider it. I'll see if I have time this weekend.

 

Action for ME's AGM is next Friday: 13th September.

"All are welcome"

To attend, register through their website: https://www.actionforme.org.uk/news/2024-annual-general-meeting/

 

Copied post
AfME AGM has been postponed.

Email just received and seen on Twitter;

--

We are reluctantly postponing our AGM – we will confirm a new date with you shortly.

This is because we have had delays with producing the annual report and readiness for the AGM itself as result of key personnel impacted by sickness. Both of these things have been outside of our control.

While the change of date was unavoidable, we will still meet all of our legal and regulatory requirements by submitting our annual report and accounts to the Charities Commission within the necessary deadlines and will share a new date as soon as possible.

Kind regards,

Action for M.E.

 

I've seen a few mentions on Twitter about an update to the 250k patient number to 1.3m on the AfME website;

https://www.actionforme.org.uk/get-information/what-is-me/how-many-people-have-me-in-the-uk/

 

From the link above,
"ME and long Covid

Numbers for people with long Covid fluctuate. Research by Davis et al (2023) identified that around 50% of people with long Covid have symptoms that directly mirror ME (including the key-defining feature of ME, post-exertional malaise). Using figures produced in 2023 for people with long Covid, this would mean that there is around 1.1m people with it.

What does this all mean?

If you add in the estimates of people with ME to the estimates of people with long Covid who have symptoms that mirror ME, including post-exertional malaise, you reach the 1.3m estimated figure of people in the UK with ME or ME-like symptoms."

 

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, including grant applications and new partnerships.

• Information from Prof. Chris Ponting (University of Edinburgh) about a recent Medical Research Council (MRC) grant application for a ME genetic research partnership, and his vision for what the Genetics Centre of Excellence hopes to achieve.

• A presentation by Prof. Simon Carding (Norwich Medical School) on the research and partnerships happening at Norwich, and his ambitions for ME research.

• A presentation by Audrey Ryback (Research Fellow, affiliated with Genetics Centre of Excellence) about her research on biomarkers for ME. Since October 2023, Audrey has been working under Prof. Chris Ponting as part of the first Clare Francis Postdoctoral Fellowship awarded by Action for ME.

• A 30-minute Q&A session, where attendees can ask questions to the panellists and other Genetics Centre of Excellence partners (Hayley Arron – PhD Candidate, Stellenbosch University & Olivia Elliot – Advisor, Strategy & Partnerships) about the future direction of ME genetic research.

More info or to register, https://www.actionforme.org.uk/news/genetics-centre-of-excellence-webinar/

 

Thanks, @Andy, that looks interesting.

I've just clicked through, and the info on the website says a recording will be shared afterwards—so those in the wrong time zone or who need to watch videos a few minutes at a time should be able to see it.

 

Learn about ME webinar for GPs: watch now
October 14, 2024

Dr Nina Muirhead and Dr Robin Kerr led a free Learn about ME webinar for GPs on Thursday 26 September.

Continues at:
https://www.actionforme.org.uk/news/learn-about-me-webinar-for-gps-watch-now/

 

Audrey Ryback:

“Excited to be presenting on how we are tackling the question: ‘Do ME blood factors change the behaviour of cells?’”
​

Simon McGrath (@SimonM)

“An earlier blog about this work:
https://mecfsresearchreview.me/2024...for-something-in-the-blood-of-people-with-me/

Remarkable researchers hunting for ‘something in the blood’ of people with ME – ME/CFS Research Review”
​

I’m very interested to hear how Audrey’s research is progressing. Is she on here?

 

Moved post

This afternoon was Action for ME's AGM. Chaired by Roger Siddle with the report on A4ME's work being given by Sonia.
Despite it being in my diary for several weeks, I forgot about it so missed the first half hour of Sonia's zoom report. An episode of ME and mast cell issues intervened.

Sonia's report was presented quickly and at the end, she answered questions submitted beforehand, and at the beginning of the meeting. What came over clearly was her emphasis on A4ME not being involved with Peter Gladwell. She said their logo was used to advertise the work ( with Tyson I presume) but they were not involved with it. Very firmly.

She did refer to having first hand experience of seeing someone with ME, and said a description of pem that had been submitted did not describe the severity well enough.

Lots of questions about research. I will try to zoom attend next year's meeting. The range of work being done by A4ME was wider than I remember. It seemed a very busy organisation.