afme

Copied from the AfME news thread From Facebook: We’re excited to announce our new research project ‘PRIME’ which will create infrastructure for ME research in the UK. Starting in October 2025 PRIME is funded by the Medical Research Council. It’s a 4 year project between Action for ME...

From AfME’s website: The full summary is worth a read to understand the purpose and who was there. Looks like a useful bit of bringing people together and networking.

This sounds great! Action for ME are putting on a webinar with the latest research updates from Prof. Chris Ponting's Edinburgh lab, with presentations from Dr Audrey Ryback and PrecisionLife, plus a Q&A with PPI (patient and public involvement) representatives (I assume from DecodeME?). You...

SequenceME: first of a kind genetic study December 16, 2024 A groundbreaking partnership has launched today. The partners are working together to secure funding for a study which will analyse the entire genetic code of up to 17,000 people with Myalgic Encephalomyelitis (ME) in a bid to uncover...

Suggestions welcome. I will be raising the very severe care problems, e-learning, and the Government Delivery Plan in general. I will also thank her for responding so quickly to concerns about care plans.

Link to post with a brief description of the workshops and a link to the recordings ************ "Please join us for this online workshop aiming to stimulate clinical trial research in ME/CFS. The speakers and discussions will look at clinical trial design in people with ME/CFS – how to...

I have just sent the following letter to AfME, signed by 15 forum members, including the 5 available committee members To discuss the document and AfME's promotion of it, go to this thread: https://www.s4me.info/threads/care-and-support-plan-template-free-to-download-action-for-me.39801/...

Moderation note: The overwhelming response from members has been that this document is not fit for purpose. If people are considering using the template or recommending it to others, we suggest first reading member comments in this thread. Update 5th September. AfME has withdrawn the document...

https://www.actionforme.org.uk/uploads/pdfs/Explaining%20M.E.%20CFS.pdf

Posts have been moved from 3 threads: UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion United Kingdom: Action for ME (AfME) news I don't tweet so please excuse format. This is probably the...

This seems like a positive development (apologies if this has already been posted, I did look but couldn't find it anywhere). https://www.actionforme.org.uk/get-support-now/our-healthcare-services/healthcare-services-for-me/

event Living with ME and Chronic Fatigue Syndrome Sept 22 'evidence-based guide' ? https://www.eventbrite.co.uk/e/living-with-me-and-chronic-fatigue-syndrome-tickets-400805137957?aff=ebdsoporgprofile

Post copied and some subsequent posts moved from United Kingdom: Action for ME (AfME) news Consultation on Media Guidelines for M.E. "This consultation seeks feedback on suggested media advice for journalists reporting on M.E. and developing a helpful handbook of best practices for...

In November last year Action for ME invited people with ME to complete a questionnaire describing their experience of ME. The responses were collated by Scottish artist and poet Alec Finlay who selected the most expressive phrases, without altering them, to create a collective patient-led...

https://www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service They have yet to update the website where Chronic fatigue syndrome/ME is used . eg Chronic Fatigue Syndrome/ME Therapy...

A number of earlier threads have commented on AfME documents and webpages: 'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020. Open Letter to the Chief Executive of Action for ME about the AfME web page on Graded Exercise Therapy (members only) A4ME Treatment...

A thread for updates and news from the UK charity, Action for ME (https://www.actionforme.org.uk/) Moderator note: Please use this thread to report and discuss current news from and about Action for ME. To discuss Action for ME, please use this thread: UK Action for ME - policies, actions...

https://www.actionforme.org.uk/research-and-campaigns/research-we-fund/research-you-can-get-involved-with/

https://www.actionforme.org.uk/news/join-our-uk-wide-self-advocacy-workshop/