Action for M.E. 2019 AGM and conference 15th October 2019

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Tuesday, 15 October 2019, 10:00 AM - 4:30 PM

same venue as last year
Bishops Square, London, E1 6AD, United Kingdom

About the Event

The Action for M.E. team warmly invites you to join us at our 2019 AGM and conference on Tuesday 15 October at Allen and Overy, London.

“If I’m not in my wheelchair, people don’t think I have a disability. If I am in the wheelchair, people treat me as though I’m invisible. The ironic thing about this disorder being called M.E. is that I’ve lost me. We need change.” Big Survey respondent

In the past three months, more than 4,000 children, young people and adults with M.E. shared their insight and experience in our Big Survey. We are using what they’ve told us to further develop the services and support we offer, to raise more awareness and increase understanding of M.E., and to work with professionals and policy-makers to improve the lives of people with M.E.

Book your free place at our 2019 AGM and conference for the launch of our Big Survey results on diagnosis, symptom management and access to healthcare, and hear how Action for M.E. is working collaboratively to improve the lives of children, young people and adults.

The venue is fully accessible, with a quiet space for resting. All are welcome, whether you are personally affected by M.E., have a professional interest, or simply want to find out more. You will have the opportunity to:

  • put questions to our panel of policy leaders (see below for full programme)
  • take part in practical workshop to learn and share skills
  • hear updates from the biomedical PhD students we are funding to look at brain function and immunity in people with M.E.
  • meet others living with M.E., and Action for M.E. staff and Trustees
  • enjoy a delicious lunch, with dietary requirements catered for (please specify when registering).
Click to expand...
Conference programme

10.00

Registration and refreshments

10.30

Welcome by Jonah Grunsell, Chair of Board of Trustees, Action for M.E.

10.40

Voices from our Big Survey, presented by the Action for M.E. staff team

11.20

Comfort break

11.40

Panel discussion, chaired by Jane Stacey, Trustee, Action for M.E.
Our panel will share reflections on the Big Survey data presented and take questions from delegates. Joining Sonya Chowdhury, Chief Executive, Action for M.E., on our panel, we are delighted to welcome:

  • Dr Nina Muirhead, Buckinghamshire Healthcare NHS Trust; and Medical Education lead, CFS/M.E. Research Collaborative
  • Ed Scully, Deputy Director, Primary Care Policy, Department of Health
  • Ben Howlett, Managing Director, Public Policy Projects
12.30

Lunch

13.40

Delegate workshops
An opportunity to develop and share practical skills. Workshop options are:

  • Self-advocating for access to services and support by Tori Jones, Advocacy Coordinator, Action for M.E.
  • Using our Big Survey data to inspire action by Sam Bromiley, Policy and Engagement Officer and Avril McLean, Project Officer Scotland, Action for M.E.
  • For professionals only: sharing best practice by Dr Joan Crawford, North West Boroughs Healthcare NHS Foundation Trust
15.10

Break with refreshments

15.30

Action for M.E. Annual General Meeting
Agenda will include:

  • Chief Executive’s report for 2018 – 2019, with contributions from the biomedical PhD students we are funding
  • Treasurer’s report for 2018 – 2019
  • Proposal for the appointment of new and continuing Trustees, subject to the results of postal ballot of Supporting Members
  • Chief Executive’s forward view 2019 – 2020
16.30

Close and depart
Click to expand...
So highlights are results of their Big Survey, and Dr Nina Muirhead

https://actionforme2019conference.eventzilla.net/web/event?eventid=2138742076

(link to discussion of last years conference to see issues already raised/discussed)
https://www.s4me.info/threads/action-for-m-e-s-agm-and-conference-2018.6076/
 
It looks reasonable, if they had done anything of more than marginal use this year it wouldn't be so bad. Instead they just designed a pretty poor survey which asked nothing on research strategy etc to inform their work, but what work
 
Barry said:
I've emailed.
Click to expand...
Same issue was raised last year and possibly 2 years ago there doesn’t seem to be a will to make it truly accessible to people with ME. I believe the response before was let us have suggestions. And I think my response was as one of the main charities for people with ME AFME should be setting the standard on innovation in making events accessible to us not trying to follow what others do.
 
Theirs allegedly 250,000 of us.

Knock off the 25% who are bedbound.

Leaving.....lots.

If we all turn up and demand lunch and refreshments, as well as individual quiet rooms, then maybe the extra costs will bankrupt the £$%&ers out of existence.

The Met may also have something to say to them, close on 200,000 people turning up at the same location, without a permit, is bound to be against some law or other.

200,000 people blocking up London, all demanding a biscuit and a cuppa, would definitely get press/media attention.

I have after all received a personal invitation ;)
 
NelliePledge said:
Same issue was raised last year and possibly 2 years ago there doesn’t seem to be a will to make it truly accessible to people with ME. I believe the response before was let us have suggestions. And I think my response was as one of the main charities for people with ME AFME should be setting the standard on innovation in making events accessible to us not trying to follow what others do.
Click to expand...
I had a recent success so thought I'd have a go :).
 
Moderator note:
Merged thread


As it’s the AFME conference this week on the 15th and it is being live streamed I thought this thread would Give those of us who are non members opportunity to watch and comment and reflect on what the charity has achieved, what it’s saying and it’s proposed direction and initiatives for the coming year. 2020.


Live stream info here:
https://www.actionforme.org.uk/news/live-streaming-our-agm-and-conference?sfns=mo
“A link to the webinar’s registration will be available soon, along with full joining instructions. Watch this space!”

and details of the conference and workshops here
https://www.actionforme.org.uk/news/save-the-date-action-for-mes-2019-agm-and-conference/

https://www.actionforme.org.uk/news/our-agm-and-conference-what-workshops-you-can-attend/
 
Last edited by a moderator:
In terms of development, I wonder how many knew AFME had added a deputy to to their chief executive so we now have a CEO and deputy CEO, I assume a highly paid post as well.
https://www.actionforme.org.uk/about-us/chief-executive/


So that’s 17 paid members of full time staff (or equivalent ( including a CEO on £70 000, deputy CEO and the supposedly 4 information and support officers who took over their Facebook page for a day here, giving advice


they spend £570 000 on salaries on an income of 1.2m. List of staff here
https://www.actionforme.org.uk/about-us/our-staff-team/
ME association 2017 had an income of £320 000. I don’t know how many paid staff they have as I could not find that information easily on their website. Yet they seem to manage to provide A similar support service minus a specialist children service.
 
Last edited:
Cinders66 said:
In terms of development, I wonder how many knew AFME had added to their chief executive so we now have a CEO and deputy, I assume a highly paid post as well.
https://www.actionforme.org.uk/about-us/chief-executive/


So that’s 17 paid members of full time staff (or equivalent ( including a CEO on £70 000, deputy CEO and the supposedly 4 information and support officers who took over their Facebook page for a day here, giving advice


they spend £570 000 on salaries on an income of 1.2m. List of staff here
https://www.actionforme.org.uk/about-us/our-staff-team/
ME association 2017 had an income of £320 000. I don’t know how many paid staff they have as I could not find that information easily on their website. Yet they seem to manage to provide A similar support service minus a specialist children service.
Click to expand...

That's a lot of staff. I can't say I could think of a single useful thing to have come out of it. Maybe it's on count of the distance that I can't see it from far away, but I can see it in other organizations, some much smaller or even without any staff.
 
Anna H said:
Wow! That's a lot.:thumbsdown:
It's way more paid staff than OMF has.
Click to expand...

They are really apples and oranges as OMF is essentially about research like Invest in ME and AFME, who Only spend about £80 000/ year on research, focus more on support / information/ “empowering”, despite their claims to be tackling injustice etc. So if you look at the staff list there’s 3 for children’s services and support, They provide a mentor service in Scotland I think that , which is convenient for the Scottish nhs who don’t provide services, they have a service on supporting people back to work and a very limited advocacy service covering 2 counties in England and they set up a lobby in Europe which might have folded.

Side note ....I wonder how America survives without national “support “ charities, given we have two. Or does America have smaller state ones that provide a support Role.

Anyway, What I don’t understand Is having 5-6 membership and fundraising when they’re obviously small Fish and achieving little in revenue, several supposed media and communication people ... doing what ? , 4 people in information and support when surely the main points on management could be covered in more literature and then a section on the website where people can ask questions which are then answered and made Searchable for the community to get advice from. Ofcourse people might still need 1-1 but 4? Then the main thing, since the current CEO is so useless and invisible and expensive, why employ a blooming deputy... I think that they Could reduce staff costs to around £300 000 which would free up around £200 000 for research.

If you think of the major recent things in the U.K., although there’s not much, it was the HoC debate which was primarily #MEaction led, there is millions missing - # MEAction , there’s were moves to get increased research funding in Scotland, -# ME action Scottish volunteers led on this I think. And MEA sort of led the way on NICE review. #MEAction and #MEA did an in depth review of the cochrane review, AFME did not. And it seems like #MEaCtion uk facilitated the recent petitioning of the EU parliament for biomedical research funds. I cannot really think of anything else. #MEACtion are with 1 paid staff in the UK?
 
Last edited:
Andy said:
That article is discussed here, https://www.s4me.info/threads/viewpoint-“it’s-all-in-your-head”—medicine’s-silent-epidemic.11351/
Click to expand...
Medically unexplained symptoms, somatoform disorder, and compensation neurosis are outdated and/or inaccurate terms. The terms subjective, nonspecific, and vague can be used inaccurately. Conversion disorders, functional disorders, psychogenic illness, factitious disorder imposed upon another (Munchausen’s syndrome by proxy), somatic symptom disorder, psychogenic seizures, psychogenic pain, psychogenic fatigue, and delusional parasitosis can be over-diagnosed. Bodily distress disorder and bodily distress syndrome are scientifically unsupported and inaccurate. Many “all in your head” conditions may be related to the microbiome and the immune system.

https://www.mdpi.com/2227-9032/7/4/114/htm?
 
You must log in or register to reply here.
Back
Top Bottom