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Action for M.E.'s AGM and Conference 2018

Discussion in 'General ME/CFS News' started by MeSci, Oct 8, 2018.

  1. MeSci

    MeSci Senior Member (Voting Rights)

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    Source: EventBee / Action for ME

    Date: October 8, 2018

    URL: https://www.eventbee.com/v/actionforme2018conference

    Action for M.E.'s AGM and Conference 2018
    -----------------------------------------
    Wed November 28 2018 09:30 AM

    Allen & Overy LLP, One Bishops Square, London, UK

    Our annual conference offers a valuable opportunity to share your views and experiences with others affected by M.E., meet Action for M.E. staff, Trustees and volunteers, and hear more about the progress we have made on delivering the promises set out in our 2016-2021 strategy to improve the lives of children, young people and adults living with M.E.

    Our provisional programme is as follows - please note this is subject to change.

    09.30 Registration and refreshments

    10:00 Welcome and housekeeping - Jonah Grunsell, Chair, Action for M.E.

    10.05 Looking ahead - Sonya Chowdhury, Chief Executive, Action for M.E.

    10.15 State of the art M.E. research - Prof Neil Harrison on the PhD studentship funded by Action for M.E.

    10.50 Improving lives - Alice Kelk on the difference the right support can make

    11.10 Break

    11.30 A decade of Forward M.E. - The Countess of Mar

    11.40 International advocacy - Sonya Chowdhury, Chief Executive, Action for M.E.

    12.00 Q&A panel: advocating for people with M.E. locally, nationally and internationally

    12.30 Lunch

    13.40 Workshops TBC

    15.10 Break

    15.30 Action for M.E. Annual General Meeting

    16.30 Close and depart

    For those who aren't able to attend, we aim to film conference presentations and AGM business for live broadcast and/or watching later.

    All are welcome. Please register using the form on this page, for each person in your party attending, so we know how many people to cater for.

    Thank you.
     
  2. Trish

    Trish Moderator Staff Member

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    Thanks @MeSci. I've added it to the calendar.
     
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  3. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    There’s a saying get your own house in order. Whilst international CFS advocacy might be a good thing, AFME do not have a good record on UK advocacy to then extend that as somehow global leaders, they operate chiefly as a support group and facilitating establishment approach to research and self management from what I see. I recall their AGM 2-3 years back where they had the symposium on severe ME, obviously groundbreaking in its effects.
     
  4. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I saw on twitter https://www.curo-group.co.uk/about-us/our-board/
    Sonya memtion8bg another organization she’s involved with which is a housing association. She’s on the board and this is her description

    “Sonya Chowdhury (Co-opted Board Director)
    Sonya Chowdhury is Chief Executive of UK health charity, Action for M.E. She has over 25 years’ experience of working in the public and voluntary sector in paid, voluntary and non-executive director roles. Sonya brings extensive leadership and governance experience. She is passionate about creating change to improve the lives of children and adults and has dedicated her career to this after her first role as a qualified social worker working in the fostering, adoption and child protection fields. Sonya is also working at an international level seeking change for people living with ME and leads an international alliance of national patient organisations to achieve this. Sonya has lived in Bath all her life although enjoys travelling and experiencing new communities and cultures. Sonya has two children and enjoys time with the family and socialising, live music and enjoying life.”




    The international work is really promoted here. Is anyone an actual member of AFME to see more what they’re actually doing on this because it’s not being talked of on Facebook. I’m afraid the cynic in me thinks it looks good On a CV but with a poor record on a high salary effecting radical change within the various needy areas of U.K ME. - CFS social care was last years buzz word - I’m not over impressed with this new focus
     
    Last edited: Oct 12, 2018
  5. Alvin

    Alvin Senior Member (Voting Rights)

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    Exactly this.
    They think that collaborating with reality denial is somehow linked to a greater good.
     
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  6. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    This is from their website which is quite low on detail of what they do as a charity but they have a page on this
    https://www.actionforme.org.uk/news/international-m.e.-advocacy-our-latest-project/

    International M.E. advocacy: our latest project
    January 15, 2018

    Action for M.E. is delighted to announce the launch of our international advocacy project. Our aim is that, as a result, the World Health Organisation (WHO) and its member states – including the UK – take action to address the biomedical healthcare needs of people with M.E.

    Sonya Chowdhury, Chief Executive, Action for M.E. says, “International advocacy has brought about much-needed change in other illness fields, such as cancer and diabetes. The urgent need for appropriate biomedical care and support for people with M.E. cannot be understated. That we have the opportunity to drive this forward, targeting decision-makers at the highest level, is hugely exciting. It’s a big step for the charity, and our Board of Trustees has carefully considered this considerable investment, which will be regularly reviewed to ensure it delivers benefit for people with M.E.”

    Sitting at the heart of our international advocacy work is the ethical principle that access to biomedical care must not be restricted for anyone who has a significant possibility of needing it.

    This principle relates to the universally recognised right to health, reiterated by Dr Tedros Adhanom Ghebreyesus, WHO Director General, on Human Rights Day in December 2017, who said: “The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition.”

    The right to access biomedical care also formed the basis of Action for M.E.’s individual and collaborative (as part of Forward M.E.) submissions to the National Institute of Health and Care Excellence’s recent consultation on the its guideline for M.E.

    Our international advocacy work will be done from Geneva, Switzerland, where key international organisations are based. We are commissioning the work from the Union for International Cancer Control (UICC), collaborating with the team there to leverage its influential network, allowing us to maximise our time, resources and capacity. The UICC, a formal partner of the World Health Organisation, is highly recognised for its work at global level in advocacy in the cancer field and the non-communicable diseases (NCDs), being one of the founders of the NCD Alliance.

    We are delighted that Alexandra Heumber at UICC will lead the work, bringing considerable experience in addressing public health issues including access to treatment, human rights, research and development, and pharmaceutical policy. Alexandra has previously been an international advocate for Médecins Sans Frontières, and was Head of Policy for the Drugs for Neglected Diseases initiative.

    Alexandra says: "It is an ethical and public health scandal that M.E. has not been addressed more seriously at the highest level, and patients' voices are not being heard. I am honoured to join Action for M.E. with the aim of changing international public health perceptions, and improving lives of people with M.E."

    Alexandra, based in Geneva, is now working with our team here in the UK to develop an appropriate and well-resourced plan to identify objectives for the project, which will require collaboration at a national and international level.
     
  7. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Alice Kelk
    Fan Engagement Executive at Notts County Football Club

    (from Linkedin)

    https://www.actionforme.org.uk/news/join-us-at-notts-county-fc-this-month/

    As part of Action for M.E.’s September sponsorship of Notts County FC, kindly gifted to us by one of our supporters, we are thrilled to be able to offer an exciting day at the oldest professional association football club in the world. These places have been donated by the club as part of our sponsorship package and we are able to offer them free of charge.
     
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    see this thread:
    https://www.s4me.info/threads/iame-international-alliance-for-me-anyone-know-about-them.4108/

    their twitter ac seems to be mostly in english and 'guided' by AfME, their Facebook is more in french.
    Doesn't seem to be much coordination.
    Still no real answers about the Forward ME group 'members' participation in this 'initiative' (apart from C of Mar and AfME).

    eta: they go by the acronym IAFME
     
  9. TiredSam

    TiredSam Moderator Staff Member

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    What on earth are they holding it at the offices of Allen and Overy LLP for - that must be costing an absolute fortune. Allen and Overy are one of the top 5 London law firms by revenue, a group which rather nauseatingly refers to itself as the "Magic Circle":

    https://en.wikipedia.org/wiki/Magic_Circle_(law_firms)

    Why on earth does AfME need a firm like Allen and Overy to host their AGM, and how do they pay for it?

    Your are shitting me. Child protection field? And she collaborated with Crawley?
     
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  10. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    one of the Trustees has links to Allen and Overy.
     
  11. TiredSam

    TiredSam Moderator Staff Member

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    Well hopefully it's pro bono and the trustee isn't on a nice little earner.
     
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  12. Andy

    Andy Committee Member & Outreach

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    Code:
    https://www.facebook.com/actionforme/videos/617313925338498/
     
  13. Andy

    Andy Committee Member & Outreach

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    https://www.facebook.com/actionforme/videos/1919279998161218/
     
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  14. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    So afte thirty years of existence AFME decide its time to get serious on biomedical research so we can begin to understand ME. Their quality of recording doesnt improve
     
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  15. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    It probably is. Lots of posh venues donate space to charities. It helps them fulfil their 'corporate responsibility' charters and, of course, can be a tax write-off.

    I also know that some large law firms will donate their services to one or more select charities. It can help both sides (reputation, legitimacy, feeling good).
     
  16. MEMarge

    MEMarge Senior Member (Voting Rights)

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    The recordings will be posted next week.

    This year most of it was recorded, except possibly the 2 workshops. These were on benefits and pacing. THe latter was by Sue Pemberton.
     
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  17. AR68

    AR68 Senior Member (Voting Rights)

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    Within seconds of speaking, the Countess of Mar said that AfME had recently improved by not being so adhered to the BPS.

    Looking at my notes from yesterday: "Immediately criticises AfME's previous stance, praises Peter Spencer."

    I'm not a huge CoM fan (she once attempted to get a friend and fellow campaigner arrested) but, occasionally, fair play to her.
     
  18. Alvin

    Alvin Senior Member (Voting Rights)

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    Then i would hope they donate to organizations that are not fronts or plants for liars.
    No such luck though often, the loudest voices are often the ones that get heard, not the best voices.
     
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  19. MeSci

    MeSci Senior Member (Voting Rights)

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    Last edited by a moderator: Dec 9, 2018
  20. Hutan

    Hutan Moderator Staff Member

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    I've just watched the first ten minutes or so of the first link. Phil Murray speaks.

    @phil_in_bristol Very interesting to hear of your background and thank you for your work. I was probably still slightly suspicious of any CMRC patient representative, but it is now clear to me that you are campaigning for good biomedical research and evidence-based treatment. Your presence in both the CMRC and AfME makes me much happier about the future direction of both of those organisations.
     

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