United Kingdom: Action for ME (AfME) news

This pack is designed to help other people understand how my health is affected, and the best ways to support me.

This resource was published in May 2018 and updated in February 2022. It is subject to revision and review by Action for M.E. and North Bristol NHS Trust (Bristol M.E. Service).
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"this resource aims to support people with M.E. to help carers +/or other professionals understand how M.E. impacts them, & the reasonable adjustments they need"

https://view.officeapps.live.com/op.../This-is-ME-Feb-2022.docx&wdOrigin=BROWSELINK

One way of avoiding the boom-and-bust pattern of activity is to stick to a baseline. A baseline is the level of a particular activity that someone can manage consistently, without triggering off a bad day. It’s essential to recognise that baselines are unique to each individual: even lifting an arm or sitting up in bed can be above the baseline for some people.

Baselines can be measured using the amount that someone does of a certain activity (e.g. reading four pages), the length of time they do a certain activity for (e.g. reading for five minutes), and sometimes the distance travelled doing a certain activity (e.g. walking 10 meters). Baselines change over time and for some people – but not everyone – they can be slowly increased by consistently undertaking an activity.
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:banghead:
 
That resource has the AfME logo on it.
@Dolphin, where did you find it? Was it via an AfME webpage?

The exact mechanisms underlying M.E. are still unknown. Our current understanding is that the nervous system and possibly the immune and endocrine systems of the body are likely to be involved in M.E. These systems are complex and operate at a deep level inside us. For this reason, someone with M.E. may look well on the outside, even if they are having a really bad day.
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'These systems ... operate at a deep level inside us'. It's embarrassing.

But is this the source of the ME/CFS Care Plan that AfME recently agreed was a problem? The one that Trish wrote a letter about.

With regards to AfME, it might just be an old problem that is lingering like a bad smell. (Although I'm sure Gladwell and the North Bristol NHS Trust are still promoting this document.)
 
That looks like another Peter Gladwell document. It has some of the exact same wording as the awful so called Care and support plan we protested about and AfME removed their support from and apologised.

So I assume Gladwell produced it and has, or had, permission to use the AfME logo on it.

Has anyone found it on the AfME website?
 
Trish said:
Has anyone found it on the AfME website?
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https://www.actionforme.org.uk/get-information/care-and-support/social-care-support/
Action for M.E. has produced a resource called This is M.E., in collaboration with North Bristol NHS Trust that will help you think about and explain how ME affects your health and what kind of support you need. It should be filled out by the person who has ME or the person that knows them best. You can then share the resource with carers, social workers and anyone else who you want to communicate your needs to.
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Sasha said:
It's a very bad document. To be of any use it needs to be a tenth of its current length and without all the made-up stuff.
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It's almost identical with much of the document we've already complained about and had taken down.

Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

Maybe all we need to do is write to AfME and point that out, with a link to our long letter, and ask them to take this one down too.
 
Dolphin said:
This pack is designed to help other people understand how my health is affected, and the best ways to support me.

This resource was published in May 2018 and updated in February 2022. It is subject to revision and review by Action for M.E. and North Bristol NHS Trust (Bristol M.E. Service).
--------
"this resource aims to support people with M.E. to help carers +/or other professionals understand how M.E. impacts them, & the reasonable adjustments they need"

https://view.officeapps.live.com/op/view.aspx?src=https://www.actionforme.org.uk/uploads/pdfs/This-is-ME-Feb-2022.docx&wdOrigin=BROWSELINK


:banghead:
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I found it plugged in I believe their magazine.

It is here:
https://www.actionforme.org.uk/get-support-now/info-and-support-resources/living-with-me/?page=2

This is M.E.
Developed by North Bristol NHS Trust M.E. service and Action for M.E., this resource aims to support people with M.E. to help carers and/or other professionals understand how M.E. impacts them, and the reasonable adjustments they need. First published in 2018, it was updated in 2022 and has been reviewed and approved by members of West of England Sight Loss Council. This means it can be accessed and used by people with a visual impairment who rely on screen readers. Sharing your feedback about this resource, via our brief anonymous feedback form, will help us make it even better - thank you.
 
AfME said:
Thanks to a private funder, Action for ME is honoured to be hosting a consultation/workshop in partnership with St George’s House, Windsor Castle, next week.

Bringing together 28 individuals from the UK, Austria, US and Canada, the workshop forms part of Action for ME's work to accelerate research to identify biomarkers, develop diagnostics and personalised treatments.
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Over two days, guests will share their research and insight to identify new opportunities and potential collaborations. We will also hear examples from another medical condition where they faced similar challenges with a lack of research and knowledge about underpinning causes, diagnosis and treatment and their experience of obtaining NICE approval for a new treatment.

We will provide a brief summary of the meeting in due course.
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https://www.actionforme.org.uk/news/me-and-long-covid-workshop/
 
 
AfME said:
Genetics Centre of Excellence: update on recent research
9 May 2025

We’re hosting a webinar to share the latest updates from research linked to our Genetics Centre of Excellence.

Don't miss this chance to hear directly from the scientists leading important discoveries and to participate in an engaging Q&A session with patient and public representatives.

Date: Thursday 6 June
Time: 2pm to 3pm
The session will be chaired by our Chief Executive, Sonya Chowdhury. It will include two presentations followed by a Q&A with scientists and Public and Patient Involvement representatives.
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More details: https://www.actionforme.org.uk/gcoe-2025-webinar/
 
Nightsong said:
More details: https://www.actionforme.org.uk/gcoe-2025-webinar/
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The speakers:
Dr Audrey Ryback
Audrey is a Research Fellow working under Professor Chris Ponting at the University of Edinburgh. She holds the first Clare Francis Postdoctoral Fellowship awarded by Action for ME.

Audrey will provide an update on two projects:

  • Exploring whether blood factors from ME/CFS patients change the behaviour of healthy cells in the lab.
  • CountME, a collaborative project she is working on with colleagues at the University of Edinburgh to leverage longitudinal electronic healthcare records from pwME/CFS to understand the epidemiology and lifelong impact of ME/CFS.

PrecisionLife team
Steve Gardner (CEO), Jason Sardell (VP, Population Genetics), and Krystyna Taylor (VP, Portfolio Strategy) will present new findings from their ME and long Covid research, including results from the LOCOME project (delivered in partnership with Action for ME and the University of Edinburgh). Topics will cover:

  • 14 new genes linked to ME/CFS and 73 linked to long Covid - many of which are shared between conditions, hinting at common underlying mechanisms
  • How genetic research is helping to develop faster, non-invasive tests, can improve risk prediction and personalised treatments, and help find promising leads for drug repurposing
  • Protective genes and what they could mean for future drug development and vaccines
  • Next steps: preview of planned publications and clinical trials
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