United Kingdom: Action for ME (AfME) news

My initial reaction to Jeremy Hunt as a Parliamentary Champion was very negative, however on further reflection and further announcements of other Champions, I have to recognise Action for ME have got together a very broad range of parliamentarians:
  • Fleur Anderson MP
  • Debbie Abrahams MP
  • Baroness Scott
  • John McDonnell MP
  • Jess Phillips MP
  • Lord Bethell
  • Monica Harding MP
  • Steve Race MP
  • Jo Platt MP
  • Max Wilkinson MP
  • Dame Harriet Baldwin
  • Paul Waugh MP
  • Tessa Munt MP
  • John Milne MP
  • Wendy Chamberlain MP
  • Graeme Downie MP
  • Alison Hume MP
  • Ruth Jones MP
  • Sir Jeremy Hunt MP
  • Siân Berry MP
See https://www.actionforme.org.uk/campaign/parliamentary-champions-network/

Action for ME say:

Our network of Parliamentary Champions are our 'go-to' individuals when engaging with Government and building support for our campaigns more broadly in Parliament and beyond.

Our champions are supportive of our work to create a world without ME and give a voice to the estimated 1.35m people in the UK who live with ME or ME-like symptoms, including post-exertional malaise.

Parliamentary Champions support us in raising awareness of ME by helping to include ME and related issues in parliamentary business and working with media to highlight key campaigns.

MPs and Peers have a wealth of knowledge so parliamentary champions may also suggest other ways to raise the profile of ME according to their skillset

Typical activities undertaken by a parliamentary champion may include one or more of the following:

  • Tabling written and oral questions on ME
  • Tabling and supporting debates on ME
  • Sponsoring events in Parliament.
  • Writing opinion pieces for national and local press.
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Cinders66 said:
It is reflecting patient will. Patients have fought a long and hard battle to get m.e put alongside Chronic Fatigue syndrome after years of seeing
CFS scorned & most would rather it replace CFS entirely. I was just saying to my mum today it was crazy to use a name based around chronic fatigue, when my carer (who cycles 5 miles to get to mine, cycles 5 miles back, and is then going to take her children swimming) claims her joint disorder causes “chronic fatigue” also. We are allowing an immediate misapprehension about our disease - an illness that at best significantly limits & at worst can decimate. Also, I don’t think people’s chances trying to stand on a street corner with a collection tin for an illness called CFS is as good as if it had any other less trivialising name. This should warn us how detrimental keeping the name CFS is, especially when we are left to fund all our own research.
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It's not my will. Using ME/CFS is the least worst solution until we actually find out what is going on with us. Myalgic Encephalomyelitis is simply inaccurate, particularly given the lack of evidence for inflammation of the brain and spinal cord.
 
Fainbrog said:
And like buses, two lots of updates from AfME in a morning.

www.actionforme.org.uk

2025 Big Survey

Find out how you can contribute to our 2025 Big Survey - a vital research project aiming to illustrate the impact of ME and long Covid.
www.actionforme.org.uk www.actionforme.org.uk
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This looks like a let’s look like we’re doing something and maybe get some shares and paths into the long covid commUnity as we do so exercise. MEA spent 2023 doing their count me in survey.

I can’t see how this will add much beyond what was discovered in previous ones, as literally very little has Improved over decades, the shades of suffering and grades of disabilty are well known.

I don’t think the Charities know what to do now their usual preference for collaboratives hasn’t delivered and have reduced - they’ve never known how to put the findings of their surveys or inquiries into effective media and campaigns to drive change , we just have circular motions of surveys, reports, discussion committees. .

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The survey is downloadable as a PDF, so that people can scan through the questions before they start answering them.

It's at this link—scroll down to the FAQ and click the option "I cannot complete the survey online".

www.actionforme.org.uk

2025 Big Survey

Find out how you can contribute to our 2025 Big Survey - a vital research project aiming to illustrate the impact of ME and long Covid.
www.actionforme.org.uk www.actionforme.org.uk
 
Cinders66 said:
This looks like a let’s look like we’re doing something and maybe get some shares and paths into the long covid commUnity as we do so exercise. MEA spent 2023 doing their count me in survey.

I can’t see how this will add much beyond what was discovered in previous ones, as literally very little has Improved over decades, the shades of suffering and grades of disabilty are well known.

I don’t think the Charities know what to do now their usual preference for collaboratives hasn’t delivered and have reduced - they’ve never known how to put the findings of their surveys or inquiries into effective media and campaigns to drive change , we just have circular motions of surveys, reports, discussion committees. .

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Contact Moderators •••
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The cynic in me tends to agree. I guess though, this is their first pandemic-influenced survey and might give a flavour of how things are and with a healthy reference to NHS services, they are at least going to be able to cite more up-to-date data. Will come down to what they actually do with the info, how they analyse it and present the results.

The questions aren't perfect, there are a few that I'd like to be able to answer differently, the severity distinctions as usual leave me in no-man's land of moderate/severe and around NHS care and how I've changed my approach to using the NHS.

Their absence from Twitter will rely on the community there sharing it wider and highlights the short-sightedness of removing themselves from there especially where something this potentially sizeable is concerned - many will have missed their AGM as a result too. As a patient community, we need them across all platforms, not just the ones that suit them where they don't get any difficult questions from patients.

On which, Question 47 could be fun.

47. In your view, what does Action for ME do well, and what could it do better to support people with ME and drive meaningful change?
 
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Fainbrog said:
The cynic in me tends to agree. I guess though, this is their first pandemic-influenced survey and might give a flavour of how things are and with a healthy reference to NHS services, they are at least going to be able to cite more up-to-date data. Will come down to what they actually do with the info, how they analyse it and present the results.

The questions aren't perfect, there are a few that I'd like to be able to answer differently, the severity distinctions as usual leave me in no-man's land of moderate/severe and around NHS care and how I've changed my approach to using the NHS.

Their absence from Twitter will rely on the community there sharing it wider and highlights the short-sightedness of removing themselves from there especially where something this potentially sizeable is concerned - many will have missed their AGM as a result too. As a patient community, we need them across all platforms, not just the ones that suit them where they don't get any difficult questions from patients.

On which, Question 47 could be fun.

47. In your view, what does Action for ME do well, and what could it do better to support people with ME and drive meaningful change?
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I can’t put in to words how mad I am at the NICE definition and hOW every time I’ve tried to raise it with the elite it’s ignored.

It’s even worse & completely unusable on a survey, because there is no moderate - severe workaround , it’s so obviously deeply flawed.
My only engagement with the survey development was on this but as ever ignored.

This will inflate numbers moderate to absurd proportions and minimise numbers ticking severe…. which agenda does that serve? the cynic in me thinks the DHSC (that, coincidentally, left severe m.e off its agenda entirely) I can’t think that those who are using it are unaware of its defects, nor those that wrote it.
 
Sasha said:
Can anyone tell from that what Our Future Health actually does?
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There’s quite a lot of information on the organisation’s website, this page is a good summary to start. Or the Wikipedia page has an overview.

It appears to be a large scale project somewhat akin to the UK Biobank to collect patient data (blood, DNA, patient records, questionnaires etc) and track over time to better understand and treat diseases. It’s the largest ever health research programme aiming to recruit 5 million people. Researchers can then use this data in various ways.

It’s been going since 2020 and is funded hy a mix of government grants, money from companies and charities. The organisation partners with the NHS and industry and charities. It looks as if AfME is one of the category of ‘affiliated charities’ with the aim of helping to raise awareness and co-promote the research.

Looks like something worthwhile for AfME to do, maybe it’ll help with links to researchers, maybe they’ll be able to help ensure people with ME/CFS are included In the dataset and the condition is considered in research.

Edit: here’s a link with information on the data collected and studies published which have used it so far
 
hotblack said:
Looks like something worthwhile for AfME to do, maybe it’ll help with links to researchers, maybe they’ll be able to help ensure people with ME/CFS are included In the dataset and the condition is considered in research.
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For folk who're able to go out to give a blood sample and have measurements taken, I guess it's worth considering taking part to make sure we're represented.

When I've sorted out what's going on with some new non-ME/CFS symptoms, I'll have a think about it.
 
That’s great @Kitty My hope would be AfME can help educate them on our needs and we’d get something more like the ME/CFS Biobank setup, with an accessible and supportive clinic but also home visits for those of us who are severely affected. Maybe that’s being optimistic but they’ve got funding and make a big deal about the importance of a diverse cohort so it should be possible.
 
hotblack said:
Maybe that’s being optimistic but they’ve got funding and make a big deal about the importance of a diverse cohort so it should be possible.
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They should absolutely do it. Anyone who wants to take part via a home visit and has the capacity to let them know could email them using their contact address from this page:

ourfuturehealth.org.uk

Contact us

Whatever your question, we're here to help. You can contact us by email or phone.
ourfuturehealth.org.uk ourfuturehealth.org.uk

Maybe if they received several emails from interested UK participants it might prompt them to think about it.


ETA: I'm actually quite impressed they've offered an email address. People assuming everyone can use phones in the bane of my life and it gets worse every year!
 
Sasha said:
Can anyone tell from that what Our Future Health actually does?
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Harvest your DNA & biological data to later profit health insurance firms who’ll be denying you or your relatives current & future coverage.

Quite possibly that’ll be the least of it in terms of eugenics.
 
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