United Kingdom: Action for ME (AfME) news

Fainbrog said:
To my simple mind though, 2 years, 5 years, it doesn’t fundamentally change that there’s no guarantee that Decode will find anything of any use, yet, everything seems to be pinned on this one study. I struggle to get past that..

Where’s the parallel UK research into what’s actually going on in our bodies? There isn’t any to the best of my knowledge - perhaps I have unrealistic expectations?
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Thought going through my head that we may not have a homogeneous condition but that particular (larger) subgroups could stand out, in the GWAS study, i.e. while not being statistically significant.
Also as per Simon's comments below, if we have further large GWAS studies then that may increase confidence re particular genes/pathways and even pick up those (genes/pathways) associated with smaller subgroups.
 
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"There is only 1 week to go before our Breaking Isolation Workshop, funded by BBC Children in Need!
If you are aged 10-14 years old with M.E., register now for our free three-part workshop!
It’s a great opportunity to meet and get to know other young people with M.E., plus there will be fun games and creative activities to take part in.
The http://ow.ly/yycX50LUWgl
*As you are under 16, we will require your parent/guardian permission to attend – they do this through the above registration form.*
You can visit our website for more information: http://ow.ly/u5at50LUWgm"

Facebook:
Code: 
https://www.facebook.com/photo?fbid=540608748110428&set=a.375875067917131

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AfME advertised for a Research Director in Spring 2022 (https://www.charityjob.co.uk/jobs/action-for-m-e-/research-director/817657). I thought it was the type of post the larger charities needed. It was never clear to me whether they filled the role, but there is a Science Director listed on their webpages now, who started in Oct 2022. He seems to have good experience, including working with large funders: https://uk.linkedin.com/in/cliff-murray-2b687923

On a related note, I am not sure whatever happened to the Breakthrough ME initiative that was launched around that time, if anyone has any info...
 
From social media,

"You are invited to our 2023 online Annual General Meeting (AGM) – all are welcome, and registration is free!

When: Friday 29 September 2023, 2-3pm

Where: online via Zoom

At the AGM, you can hear from Action for M.E. staff and trustees, ask questions, and find out how we’ve worked with and supported #pwME in the past financial year.

Visit our website to register. A full agenda and joining instructions will be sent to you a few days before the event: https://ow.ly/nYPa50PKsI8"

Facebook: https://www.facebook.com/actionform...GjxiHLhM3VorrZfeNewpCi9B7ZFVdrN5VndnFAg3SNA7l
 
First Clare Francis Research fellowship awarded

"Audrey’s research project will try to identify and characterise factors in the blood of patients that may be responsible for disturbing their mitochondria. Equally important, if Audrey can show that such a factor exists, this could provide a meaningful and easy-to-measure diagnostic test for ME/CFS, for which none currently exists."

https://www.actionforme.org.uk/news/first-clare-francis-research-fellowship-awarded/
 
If these new Drs are in the same mould as Dr Barham their current only Dr, this is defo a good move. From their AGM, iirc, they saw c.75 patients last year (which made me feel rather blessed that I was one of them given that number - tbh, I hadn't considered how many, but I'd assumed probably more), so, this gives them much more capacity to help those on their wait lists.

Hopefully they still have bursaries to help those less able to pay for appointments, which are not cheap.
 
New Genetics Research Grant Secured launching LOCOME

"PrecisionLife Project Awarded Innovate UK Grant to Improve Diagnosis and Treatment of ME/CFS and Long Covid

  • Innovative precision medicine project to diagnose ME/CFS more accurately and long Covid and find the most appropriate treatment options for patients.
  • PrecisionLife will perform combinatorial analysis on long Covid datasets and the world's largest collection of ME/CFS patient data to identify the mechanisms causing the diseases.
  • The project builds on previous studies into ME/CFS and long Covid undertaken by PrecisionLife in collaboration with Action for M.E. and University of Edinburgh.
Leading computational biology company PrecisionLife®, which is driving precision medicine in complex chronic diseases, Action for M.E., and the MRC Human Genetics Unit at the Institute of Genetics and Cancer, University of Edinburgh have been awarded a £622,000 grant by Innovate UK's Advancing Precision Medicine programme to improve diagnosis and treatment for the millions of people affected by ME/CFS and long Covid."

https://www.actionforme.org.uk/news/new-genetics-research-grant-secured-launching-locome/

New thread on this project here:
https://www.s4me.info/threads/£622-...nd-treatment-for-me-cfs-and-long-covid.36574/
 
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