Action for ME AGM (UK) is live streaming now

Currently 12:35pm UK Time. If I can find an agenda for the day I'll post it here

https://www.actionforme.org.uk/news/watch-our-agm-live-tomorrow-morning-from-1025/

Watch our AGM live tomorrow morning from 10.25
November 15, 2017

Action for M.E.'s Annual General Meeting (AGM) will be held tomorrow morning in London, and you are invited to watch live via our Ustream channel. A film of the AGM will also be uploaded to YouTube in due course.

Reviewing the services and support we offered to people affected by M.E. throughout 2016 - 2017, our Chief Executive, Sonya Chowdhury, will also set out some of the forthcoming work we will undertake to improve the lives of people with M.E., inspire action at local, national and international level, and invest in biomedical M.E. research.

You will also hear from Philip Marsden, Treasurer to the Board of Trustees, about our income and expenditure the past financial year. This is set out in our annual Trustees' report and accounts, which will be published tomorrow.

Following our AGM, our conference will focus on our children's services consultation, with roundtable discussions offering the opportunity for conference delegates to share their views and experiences on how we can better support children with M.E. and their families. In the afternoon, we will screen Jen Brea's award-winning M.E. documentary, Unrest.

 

From their Facebook Page


People with M.E. who are too ill or unable to attend our AGM and conference next month will be able to join in with discussions about our children’s services from home.

Action for M.E. will be holding virtual roundtable discussions that you can join via Google Hangouts when our AGM and conference takes place on Thursday 16 November.

Our consultation on how we can best design support services that reduce isolation, increase knowledge and awareness, and ensure equality of care for children with M.E. and their families will form part of the day’s events.

Anyone interested in getting involved should email media@actionforme.org.uk

Places are limited and while we hope to accommodate everyone who’d like to join the virtual discussions, parents/carers of young people with M.E. and children who have the illness will be prioritised.

 

Thanks. I'm terrible at engaging with these sorts of things live. Any noteworthy things anyone else noticed?

 

Some videos can still be viewed:

edit: And if you click through there are more videos listed on the page.

Not sure I can bring myself to go through it. Sonya started off pointing out how every years she talks about what an exciting year it has been and how it's going to be even more exciting next year... I wonder if she ever looks back at her time and realises 'overall, I've probably just made things worse', before forcing herself to adopt some more positive delusions.

edit 2: The list of achievements is so weak. I can't tell if Sonya realises this, and is trying to spin it, or if she really thinks they're doing well. What are they fighting for? It's as if they're just limping on just because no-one wants to suggest winding up.

They're proud of their work with Jobcentre plus... I've not seen many glowing reviews of pwME of how they're treated within this system. While the DWP is so committed to screwing PwME over, collaboration seems likely to make things worse.

They're approach to research sounds bad too. They're focussing on phds. Why do they think that they will be able to identify competent young researchers? So far they've given money to one of Crawley's students who went on to smear patients for rejecting 'evidence based treatments'. Why can't they stop making things worse?

Their income dropped by a third, but they said that was largely just down to fewer endowments, which apparently do fluctuate. They seemed to avoid saying how much of their money is spent on salaries for staff, which is what I was interested in.

I've had to stop at 30:00. Unbearable.

 

https://www.actionforme.org.uk/uploads/2016-2017-trustee-report-and-accounts.pdf (Page 32)

 

This is a personal thing, but to me this kind of set-up always looks like a politburo assembly. Do AGMs really have to be done like this?

I realise that, not for the first time, I'll likely be accused of wanting to hold hands and sing Kumbaya (and what's wrong with that?, I say) but isn't there a better way? It seems like any time people organise they automatically drift into these standardised operating procedures in which everything is formal and hierarchical. We need to have an AMG — let's hire a conference hall and put all the executives on a stage. That's what people do. But do they have to? Isn't this how things get paternalistic and mired in authority and procedure — banes of life in the early twenty-first century.

I just feel like this way of doing things is outmoded and gets in the way of meaningful collaboration. It doesn't feel appropriate to a group supposedly concerned with helping and representing.

 

I get the impression AfME realise their positions on PACE have been shown to be indefensible, but don't want to acknowledge that. So they're just adrift, trying to avoid the most important issue for improving that way that patients in the UK are treated.

If they want to rejoin reality, and start properly engaging with other patients and advocates, they're going to have to acknowledge how badly wrong they got things.

 

But don't most places that have AGMs have voting members; I don't think AfME members have any such rights(?)

 

their report on the AGM:
https://www.actionforme.org.uk/news/agm,-childrens-services-and-unrest-film-at-our-conference-today/
"Treasurer to the Board of Trustees, Philip Marsden, explained that Action for M.E. has achieved a sound underlying financial performance for the third year running, citing our 2016-2017 Trustee Report and Accounts. Our recorded total income was £681,687, down 33% on last year due to the inclusion of an exceptional legacy (and also the ending of our pilot employment support project). However, excluding the effects of legacies, all other income was in fact down only 2.1%."

 

Use of the rooms used for the AGM is freely provided by the business that owns/leases the building.

Having the Chief Trustee, CEO and Treasurer on the platform was fine. The rest of the people attending were sitting around large tables.

I don't really understand your above comment @Sly Saint. Last (accounting) year, they received several legacies including a very large one. None were received in the accounting year 2016-7. This is why their income was significantly down.

I think their members must have voting rights because there had been a postal ballot re electing new Trustees etc.

Yes I did go, because I am interested in what they are doing for people with ME.

I appreciate that they have a dodgy history, especially with respect to PACE etc and undestand that many PwME do not want to engage with them.

 

It's not that I don't want to engage with them, it's that they refuse to engage on the most important issues facing PwME in the UK. They're continuing to work with Esther Crawley, while evading questions about the quality of her work and not commenting on her smearing of critics. To me, it seems like that refusal to engage is almost entirely on AfME's side.

 

not my comment; I just copied and pasted a bit from their report.........as their finances were being discussed earlier in this thread.
The biscuit was not intended to mean anything.

 

Ah OK. I only flicked thro the report. I got there prob halfway thro the Treasurer bit, so heard what he'd said about income and legacies.

 

"Unlike most charities and many ME charities, AFME does not allow its paying members to become legal members of the charity and therefore have no input into the direction of the charity and voting rights. It only recognises its own trustees as members."

http://me-pedia.org/wiki/Action_for_ME

 

I did seem them talking about changing that somewhat, and then others saying that the changes were pretty cosmetic. I don't know what the exact current situation is.

 

I don't know either, but there were over 40 votes for each Trustee being elected or re-elected. I met a couple of members there, so could email them.

 

I have tried.

 

I have just downloaded a Stone bird summary on this history to be fully informed.
It's something I'll dip into now and then. I suspect that SC now has different views on EC following Danny's diagnosis, and the LP fiasco.
I don't think there is much general knowledge about biomedical research and I definitely agree that some recent actions have been dubious.
Don't want to throw the baby out with the bath water. I may even join for a year.

Realise I will be in a minority on here. But then I still think CS can do more by remaining in the tent.
Now retreating to bunker.

Did anyone ever find a suitable cartoon including tents/bukers/friendly fire....

 

@Sly Saint is that a microscope in your version of S4ME? I sometimes see it as a cannon!

 

It is supposed to be a microscope (it's in the emojis) but I guess in some contexts a cannon would be OK such as blowing PACE to bits.