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  1. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Feb 21, 2020 in forum: Advocacy Projects and Campaigns
  2. Action for M.E.
    Post

    '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....
    Post by: Action for M.E., Feb 18, 2020 in forum: Monitoring and pacing
  3. Action for M.E.
    Post

    '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...
    Post by: Action for M.E., Feb 7, 2020 in forum: Monitoring and pacing
  4. Action for M.E.
    Post

    '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...
    Post by: Action for M.E., Jan 30, 2020 in forum: Monitoring and pacing
  5. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Feb 13, 2019 in forum: Monitoring and pacing
  6. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Feb 13, 2019 in forum: General ME/CFS news
  7. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Feb 13, 2019 in forum: Open Letters and Replies
  8. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Feb 8, 2019 in forum: General ME/CFS news
  9. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Feb 8, 2019 in forum: Open Letters and Replies
  10. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Jan 30, 2019 in forum: Open Letters and Replies
  11. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Jan 30, 2019 in forum: Open Letters and Replies
  12. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Jan 24, 2019 in forum: Open Letters and Replies
  13. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Jan 23, 2019 in forum: Open Letters and Replies
  14. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Jan 18, 2019 in forum: Open Letters and Replies
  15. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Jan 17, 2019 in forum: Open Letters and Replies
  16. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Jan 17, 2019 in forum: Open Letters and Replies
  17. Action for M.E.
    Post

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

    Thank you @Trish, I will make sure we clarify this.
    Post by: Action for M.E., Aug 31, 2018 in forum: Psychosomatic news - ME/CFS and Long Covid
  18. Action for M.E.
    Post

    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:...
    Post by: Action for M.E., Aug 31, 2018 in forum: Psychosomatic news - ME/CFS and Long Covid
  19. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Aug 31, 2018 in forum: Psychosomatic news - ME/CFS and Long Covid
  20. Action for M.E.
    Post

    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...
    Post by: Action for M.E., Aug 29, 2018 in forum: Psychosomatic news - ME/CFS and Long Covid
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