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  1. Action for M.E.

    UK: Workshop: "What big research questions do people with M.E., their carers and clinicians want answered?", 10th March 2020

    We can confirm that there will be an online session run soon after the conference so that people unable to attend the workshop also have an opportunity to be involved. We will let you know as soon as we have finalised details. However, we are keen to make the presentation from the workshop...
  2. Action for M.E.

    'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020.

    We have now finalised our pacing booklet, and shared it on our website. https://www.actionforme.org.uk/news/updated-resource-pacing-for-people-with-me/ Thank you again for your feedback. If anyone would like to see our “You said, we did” summary regarding stakeholder feedback for this...
  3. Action for M.E.

    'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020.

    Hello. We are still working on the pacing booklet, amid much other work, partly due to us relying on an external designer to make edits. I wanted to keep you in the loop with this and let you know that we hope to have this done as soon as possible. I will post here again when we've done this...
  4. Action for M.E.

    'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020.

    Hello - here to share a message from Sonya Chowdhury, our Chief Executive, as follows: I wanted to contact forum members regarding the Action for M.E. pacing booklet, having read all your comments over the past few days. I have also gone back to the booklet to review it in light of these...
  5. Action for M.E.

    Pacing - definitions and sources of information

    Thanks @Amw66 - our Mentor M.E. project launched in 2016, and will continue until 2021. It aims to grow a volunteer peer-mentoring network across Scotland, which empowers people living with M.E. and their carers to manage the condition in line with their individual circumstances. You can read...
  6. Action for M.E.

    AfME survey: Support in School for children with M.E./CFS, closes Mon 18th Feb 2019

    Thank you for this feedback - it's really helpful and I'll share it with my Policy Officer Sam so he can be sure to bear this in mind when analysing and reporting on the survey data. Clare Ogden Head of Communications and Engagement Action for M.E.
  7. Action for M.E.

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Hi @Sasha. Thanks for posting the question again so I don't miss it. @dave30th said, in post #73: "But the document itself seems to make assumptions that many or most patients need positive support to "encourage" them to keep working and "build up their baseline"-- in fact, the notion and...
  8. Action for M.E.

    AfME survey: Support in School for children with M.E./CFS, closes Mon 18th Feb 2019

    Hello. We're gathering this information as part of our work with the Medical Conditions in Schools Alliance. A similar survey is being undertaken by other long-term health condition charities, and we are going to be working with them to analyse the data and show Ofsted and Department of...
  9. Action for M.E.

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Hello. As you know we are now reviewing the toolkit and I will continue to check this thread for feedback on it to feed into this process. Thank you everyone for sharing your views. In response to @DokaGirl: The toolkit is not for anyone severely ill, and it’s clear we need to make that much...
  10. Action for M.E.

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Hello. This post addresses a number of questions/concerns raised in this thread. I am trying to respond in chronological order, and will take a look at the most recent posts (#112 onwards) as soon as I can. Once again, I thank you for your patience. Clare Ogden Head of Communications and...
  11. Action for M.E.

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Hello. Yes, the toolkit has now been withdrawn from the website. This happened yesterday, and I let Trish know my email, but not before she discovered this for herself by checking this morning. Sorry Trish, I think our posts crossed! Clare Ogden Head of Communications and Engagement Action for M.E.
  12. Action for M.E.

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Hello - we've updated our SEE M.E. page this morning to address some of the concerns being raised. You can read our statement below and also at https://www.actionforme.org.uk/see-me My team and I are focusing on the debate now for the rest of the day and I will be back on the forum next week...
  13. Action for M.E.

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Thank you Trish for your questions, and for setting them out so clearly; I’ll address each in order here. First, I just wanted to look at the concept of vocational rehabilitation. A quick Google led me to this 2011 discussion paper which, based on a classification system used by the World...
  14. Action for M.E.

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    We do not support M.E. as being suitable for treatment under IAPT. While there's a place for talking therapy, if a patient chooses, to address mental health issues arising as a consequence of living with a long-term condition, it must never replace appropriate medical care for that condition...
  15. Action for M.E.

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Our Patient and Carer Reference Group was set up a few years ago, and we recruited by posting a news story about this on our website and social media. It has no links to any NHS services. Anyone with M.E. or someone who is a carer for a close family member with M.E. was invited to join...
  16. Action for M.E.

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    I am posting for the first time in a number of months, and would like to apologise for my absence from the forum. I have had some capacity issues in my team which forced me to be very strict about what I could and couldn't do. I realise it would have been helpful to come on here and say this...
  17. Action for M.E.

    Action for ME: The PACE trial and behavioural treatments for M.E. [position statement]

    Thank you @Trish, I will make sure we clarify this.
  18. Action for M.E.

    Action for ME: The PACE trial and behavioural treatments for M.E. [position statement]

    Hiya - This is an old version and I'm not sure why it's still online. I will make sure it's deleted! This is the current version: https://www.actionforme.org.uk/uploads/pdfs/me-and-work-2016.pdf
  19. Action for M.E.

    Action for ME: The PACE trial and behavioural treatments for M.E. [position statement]

    We are still reading and digesting everything on this thread - many thanks for the feedback shared so far. With regards to reviewing our material - patient involvement is crucial, and we will engage our existing Patient and Carer Reference Group who review all our new/revised resources. Many...
  20. Action for M.E.

    Action for ME: The PACE trial and behavioural treatments for M.E. [position statement]

    Thank you @Cheshire and @Andy for sharing our statement, and many thanks to all who have shared feedback so far. Sonya (Chowdhury, our Chief Executive) and I will take time to read it all and share with the team as appropriate. I am in transit today and tomorrow, but plan to come back and...
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